DEVELOPMENT OF PGD/HLA DEBATE
Part One – Published Statements and Opinions
Research methodology:The methodology for this review was subjective but informed. The websites of relevant professional and international bodies were studied for recent views on the debate. A control search was performed using the Google search engine (keywords: committee view PGD HLA. This returned one additional document which was not a committee opinion but the summary of a recent conference on prenatal testing in the Netherlands. This document is supplied in the annex to this report.
This report is divided into 3 parts. Part 1 reports on the national opinions, part 2 surveys the international opinions and part 3 focuses on published opinions by European ethics councils. The evidence level corresponds to 1Vb (authoritative statements from expert review and/or opinions).
I. NATIONAL OPINIONS 1. BMA
The BMA's Annual Representative Meeting in July 2003 welcomed the Court of Appeal’s judgment allowing parents to use PGD to select an embryo on the basis of their genetic information in order to allow treatment of a seriously ill family member.1 The judgment also reflects the view of the BMA’s Medical Ethics Committee. The MEC recommended that the BMA should "support, in principle, the use of PGD combined with tissue typing in all cases where this was the only possibility of treatment for a sibling whose condition was life-threatening or sufficiently serious to justify the use of PGD". This view was adopted as BMA policy.
Furthermore, the MEC recommended that selection of an embryo should also be allowed in cases where there is no risk of a serious genetic disorder, but where selection is requested solely to allow treatment of a seriously ill sibling. 2
They argue that any objection to using HLA typing in the absence of genetic condition (Whittaker case), on grounds that it does not benefit the embryo, is questionable since PGD to avoid a serious disorder also does not benefit the affected embryo which would be destroyed. Even if there was a perceived risk for the created child as a result of being exposed to the PGD procedure ‘this would necessarily mean that it should be prohibited’. This is because ‘parents expose their children to other risks for the benefit of other people, such as participation in research, provided those risks are minimal. Any risk of harm would also need to be balanced against the psychological benefits to the donor, and the family unit as a whole, from saving the life of a dying child.’ It would therefore be acceptable to extend the use of embryos (in addition to improving fertility treatment etc.) and permit their use to save a child’s life.
The Committee concludes that there is no morally relevant difference between the two cases; this view was accepted by the Board of Professional Activities.
The BMA recognizes the importance of the welfare of the child born as a result of the treatment but feels that recognition of this welfare is not incompatible with selection on the basis of tissue type alone. It recommends certain safeguards including the counselling of parents in advance. The same safeguards as in other sibling to sibling transplants should apply in case the cord blood transplant should fail.
In a briefing paper to Parliament in October 2003 the BMA expressed the hope that the necessary legislative changes will be made to allow selection by tissue typing where this is the only possible treatment for the sibling. This would allow those needing this treatment to benefit from the safeguards and regulatory mechanism in the UK, rather than having to seek the treatment overseas.
2. HGC (formerly ACGT)
No opinion published since 2001. In its response to the HFEA on the outcome of the joint HFEA/ACGT consultation on PGD the HGC recommend that PGD should be limited to specific and serious conditions.3 The issue of PGD/HLA typing was briefly raised at the first meeting of the HFEA/HGC joint working party on PGD in December 2000 where the difficulties of this issue were acknowledged but no further information is available. At the meeting of the Genetic Testing Sub-Group in February 2001 several members expressed concern that PGD should not be used for positive selection.4
3. Nuffield Council on Bioethics
1
BMA Ethicsbrief Issue 66, September 2003, available at URL=<http://www.bma.org.uk/ap.nsf/Content/ethicsbrief+66>
2
Ethicsbrief of the Annual Representatives Meeting, http://www.bma.org.uk/ap.nsf/Content/EthicsBrief65/$file/65.pdf
3
Paper HGC01/P2, Preimplantation Genetic Diagnosis, http://www.hgc.gov.uk/papers/hgc01-p2.pdf
4
No published opinion on PGD/HLA.
4. Royal College of Obstetricians and Gynaecologists Discussion document in preparation.
5. British Fertility Society
In its response to ACGT/HFEA consultation in 2000 the BFS argues that care must be taken if a government authority is in charge of regulation. Such regulation effectively legitimises a role for the state to allow or prohibit the birth of an individual based on identification of its genetic composition. This might legitimise discrimination against disabled individuals.
The BFS recommends that HFEA should not be given power to make decisions about the tests that can be offered for PGD. The final decision should rest with the parents.5
II. INTERNATIONAL OPINIONS 1. ESHRE
ESHRE Ethics Taskforce on PGD (2003)6
Recommend multidisciplinary approach. They refer to two ethical principles (1) the welfare of the child and (2) reproductive autonomy. They consider the benefits for the receiving sibling to outweigh the disadvantages for the future child. Also consider PGD/HLA as morally acceptable if child is not used solely as means to an end. They express no explicit view on HLA testing without simultaneous screening for inherited disorder but their arguments would seem to be applicable to both PGD/HLA and HLA only.
At the forthcoming ESHRE conference in Berlin the Special Interests Groups for Reproductive Genetics and for Law and Ethics will be organising a pre-congress course on the ethical and political issues concerning PGD/HLA (among other topics).
2. UNESCO
International Bioethics Committee (IBC)
The IBC’s report on Pre-implantation Genetic Diagnosis and Germ-line Intervention7 does not make any general statement about the moral status of human prenatal life but adopts a pluralistic approach.
They consider PGD/HLA for purposes of screening for a specific blood disorder in the child to be born as ethically acceptable. But PGD with the only goal of HLA typing and selecting embryos as donors is ethically unacceptable. Moreover, PGD should be restricted to medical indications. The Committee recommends more psychosocial studies to evaluate influence of availability of PGD on social pressures, parent-child interactions and impact on disabled people.
Intergovernmental Bioethics Committee (IGBC) Endorses above findings.8
3. WMA
No explicit opinion on PGD/HLA. But the WMA Declaration of Ottawa on the Rights of the Child to health care (October 1998)9 might be relevant. The general principles of this
5
http://www.britishfertilitysociety.org.uk/practicepolicy/documents/preimplantation.html
6
The ESHRE Ethics Task Force, Taskforce 5: preimplantation genetic diagnosis (2003) Human Reproduction 18 (3) 649-651, http://www.eshre.com/ecm/files/SIGS/ethicslaw/task5.pdf
7
24 April 2003,
http://portal.unesco.org/shs/en/file_download.php/1f3df0049c329b1f8f8e46b6f381cbd1ReportfinalPGD_en.pdf
8
Recommendations of the Third Session of the IGBC (23/24 June 2003),
http://portal.unesco.org/shs/en/file_download.php/4498ce3711a5ac4e6dd30fcd08178612RecommendationsCIGB3_e n.pdf
9
declaration state that ‘every effort should be made to protect to the maximum extent possible the survival and development of the child’.
4. United States
President’s Council on Bioethics (successor to National Bioethics Advisory Commission)
In its recent report10 the Council discusses PGD and embryo selection generally. The Council notes that whereas it is not known whether embryo biopsy affects the development of the child later born studies on this are currently underway in Europe. It regards positive selection for ‘designer babies’ as currently not on the horizon. It cites means to an end argument as a possible risk especially if PGD should be used for non-medical or enhancement purposes.
It also suggests that PGD risks normalizing the idea that a child’s genetic make-up is quite properly the concern of parental reproductive choice. New technologies may change parental attitudes and expectations towards their children. It considers the wider societal effects of limiting reproductive choice due to social pressures. But notes that these concerns may be unjustified and premature. PGD could be seen as one way of expressing parental responsibility for the care of one’s offspring
It briefly discusses PGD/HLA specifically. This poses the additional ethical concern of deliberately creating and selecting a child to benefit another. The Council questions whether it is proper to assign to a child a saviour role and give it life on condition that the child fulfil this role.
5. Australia
Australian Health Ethics Committee
(principal committee of the National Health and Medical Research Council)
The NHMRC have proposed a draft on ‘Ethical guidelines on the use of reproductive technology in clinical practice and research’ which closed for public consultation in March 2003. The guidelines propose that PGD should only be used to obtain information about a serious genetic condition or disease.11
Once issued these guidelines will replace previous NHMRC guidelines on reproductive technology and will form part of the new legislative framework to regulate reproductive technologies under the Research Involving Human Embryos Act 2002.
Infertility Treatment Authority, Victoria, Australia
The ITA’s policy12 allows PGD/HLA to select embryos that do not have a genetic disease and are HLA compatible. This is in accordance with the first two guiding principles of the Infertility Treatment Act 1995 which state that the welfare of the child to be born is paramount and that human life should be preserved and protected. The ITA further draws attention to three further ethical considerations when reviewing an application. These are (1) the motivation and level of understanding of the parents (which it considers difficult to identify), (2) the issues that may arise when the sick sibling is not cured and (3) the status and relationships of the child within the family.
III. EUROPEAN UNION 1. Council of Europe
Report by the working party on the Protection of the Human Embryo and Foetus (June 2003)
10
Reproduction and Responsibility: The Regulation of New Biotechnologies, March 2004, http://www.bioethics.gov/reports/reproductionandresponsibility/index.html
11
National Health & Medical Research Council, Ethical guidelines on the use of reproductive technology in clinical practice and research (Draft, February 2003), section 8.1, document available at
URL=<http://www.health.gov.au/nhmrc/issues/pdfcover/repro.htm>
12
Infertility Treatment Authority, Tissue typing with preimplantation genetic diagnosis (reviewed January 2003), document available at URL=<http://www.ita.org.au/_documents/policies/Policy_PGD_HLA_Matching.pdf
Rather than represent an opinion the report acknowledges and reflects diverse opinions of the working party and is intended to advance ethical discussion.
One of the arguments against the use of PGD/HLA is that it would distort the original purpose of PGD since the child will not be conceived for his/her own sake but for the benefit of another. In this context, some emphasize the importance of establishing the parents’ motivation for having a child but recognize that in practice this would be difficult. They envisage difficulties in situations where embryo was free of disease but HLA incompatible. In circumstances where the embryo is unaffected but not HLA compatible the question of the moral status of the embryo is raised. If a healthy but incompatible embryo were destroyed this would constitute instrumentalisation of the embryo. On the other hand parents might genuinely wish to have another, healthy child. Even though PGD for purposes of HLA typing alone offers no benefits to the embryo the procedure is nevertheless for the benefit of family solidarity. Furthermore for the benefit of social solidarity society should allow parents to have access to potentially life saving treatment.
The Council recommends non-directive counselling to ensure that the welfare of the future child is carefully considered. Parents also need to consider in advance the potential failure of an umbilical cord blood transplant.
2. Denmark
Danish Council of Ethics
In their resumé of recommendations13 on ‘Microinsemination and pre-implantation genetic diagnosis (PGD)’ (2003) all sixteen members of the council consider it ethically unacceptable for PGD to be used to obtain compatible tissue type. No reasons given.
3. Sweden
In January 2004 the Swedish National Council on Medical Ethics published an opinion on PGD. This document is currently being translated.
4. France
National Ethics Committee for Life Sciences and Health14 (July 2002)
In this report15 the Committee considers the specific case of an application to apply PGD/HLA to treat a child with Fanconi’s Anaemia. In their summing up the Committee conclude that to choose a child solely on the basis of HLA compatibility is unacceptable.
Ethical reasoning on PGD/HLA
The Committee identifies the authenticity of the parental project as the essential problem and the potential risk of the child becoming a commodity. Specifically, the legitimate wish to bear a child does not equate the right to a child object. But these concerns do not rule out possible secondary benefits to others as long as the child’s welfare remains paramount.
On the issue of selection, the Committee point to a distinction between a negative choice in PGD and the positive choice that is made when selecting an HLA compatible embryo. They do not see the selection between different unaffected and HLA compatible embryos as problematic since choice is inherent to IVF where the number of transferred embryos is always kept to a minimum. However, if only unaffected but incompatible embryos are produced and subsequently rejected for implantation this may indicate the ‘true’ parental motivation and would risk the embryo being instrumentalised.
But since selection is inherent to IVF why should it not be possible to make a positive choice regarding a particular characteristic? Specifically, why should leaving the choice to fate represent a higher moral ground than making a deliberate choice on grounds of a particular characteristic. Especially if, in the case of HLA, the selection is socially neutral, the outcome of producing a healthy and compatible embryo can be viewed as good.
13
http://www.etiskraad.dk/sw1771.asp (2003)
14
Comité Consultatif National d’Ethique pour les sciences de la vie et de la santé, URL=< http://www.ccne-ethique.fr/english/start.htm>
15
With reference to Kant’s dictum (never solely as a means, but always as an end) is instrumentalisation unavoidable? Immune compatibility could be seen as a form of solidarity born of brotherhood. The child will still be a singular being with unique life projects. But in the medium to longer term the question of a possible compulsion to donate in case of treatment failure cannot be ignored. The Committee cite Paul Ricoeur who sees PGD/HLA as a ‘confrontation between the situation of a child about to die, and that of a child who may be entering a lifetime of constraint’.
What will happen in practice?
Ideally, healthcare professionals will transfer unaffected, compatible embryos if available. A woman should not be forced to accept an incompatible embryo she rejects. But potential problems and moral conflicts that such a scenario would bring to both the woman and the healthcare professional must be anticipated.
Safeguards
1. Possible psychological risks to the child must be considered. Here a comparison with traditional transplantation may give an insight into psychological effects.
2. Parents must be made aware of the possibility of failure and consider how they would adapt to such a situation. Moreover future pressure on the compatible child to ‘donate’ bone marrow and parents should be alerted to these potential pressures.
Future concerns
PGD/HLA might be extended for use of cousins, other family members and parents. Any improved future application of the techniques may lead to systematically HLA compatible families able to mutually and endlessly repair each other.
Principle of lesser evil is understandable but balance between reasonable therapeutic effort and excessive obstinacy must be struck.
In conclusion the committee formulate two requirements:
1. Wish to undergo the procedure must represent a true parental project. 2. Searching for immune compatibility must take second place.
5. The Netherlands
The Science and Ethics Advisory Committee of the Royal Netherlands Academy of Arts and Sciences published a report of a symposium entitled ‘Prenatal testing – new developments and ethical dilemmas’. This was a collection of lectures and discussions by Dutch geneticists with some European contributions.16 Some of the participants are members of the UNESCO International Bioethics Committee.
16
Royal Netherlands Academy of Arts and Sciences, ‘Prenatal testing – new developments and ethical dilemmas’, symposium of 18 June 2003, report published 2004 available at
Part 2 – Literature review of ethical arguments relevant to ‘saviour
siblings’
Research methodology:
The HFEA does not have access to specialized search engines such as Social Sciences Citation Index or Philosopher’s Index. The search strategy for this review of abstracts therefore consisted of a search of PubMed, a service provided by the National Library of Medicine which also covers MEDLINE.17 In addition, a complete search of a selection of leading peer-reviewed journal publications (no anthologies or monographs) in academic bioethics was conducted going back to the year 2000. One book review was included. The PubMed results were edited to primarily include articles published since 2000 with particular relevance to the PGD/HLA debate. This also included articles relevant to the ethics of bone marrow and organ donations from children. Earlier articles on the ethics of PGD in general (for example, discussions focussing mainly or solely on the moral status of the embryo) were excluded.
The journals searched were: Journal of Medical Ethics
Cambridge Quarterly of Healthcare Ethics Bioethics
Theoretical Medicine and Bioethics
Hastings Center Report (no abstracts available)
The following biomedical journals were included in the search: Human Reproduction
Human Reproduction Update
BMJ (searched for keywords PGD HLA)
The review is divided into 4 parts. Part 1 and part 2 comprise selected abstracts of a PubMed search on PGD and bone marrow transplantation. Part 3 provides selected abstracts of the academic literature. Part 4 includes relevant titles from the Hastings Center Report. We were also sent a copy of Professor Guido Penning’s recent paper on PGD/HLA. The paper and a summary of its main arguments are attached.
The evidence level of the literature presented corresponds to 1Vb (authoritative statements from expert reviews an/or opinions).
17
A recent study showed that in order to obtain adequate coverage of (especially European) bioethical literature several database searches have to be combined. Among the single database searches MEDLINE was shown to have the second highest coverage (22.1%). Fangerau, H., Finding European bioethical literature: an evaluation of the leading abstracting and indexing services, Journal of Medical Ethics (2004) 30 299-303
Part 2.1 – PubMed
Search terms entered: PGD ethics 1: Med Law. 2003;22(3):489-94.
Ethical considerations of applications of preimplantation genetic diagnosis in the United States.
Adams KE.
Oregon Health and Sciences University, Department of Obstetrics and Gynecology, Portland, Oregon, USA.
Preimplantation genetic diagnosis (PGD) was developed to offer diagnosis of genetic disorders prior to initiation of a pregnancy, whereas previously such disorders would be diagnosed at amniocentesis or chorionic villus sampling after a pregnancy had already been undertaken. Such application of this technology is not controversial. But PGD has been used to not only diagnose genetic disorders but also to select for certain other characteristics, and this use of the
technique is much more controversial. A case is presented in which PGD was used not only to select against a genetic disorder, but to select for a certain HLA
type which matched an affected sibling. The new child's cord blood was transplanted into his affected sister, who subsequently was found to be free of disease. The ethics of "having a child to save a child" are explored, and possible other uses of PGD that lead to eugenic outcomes are considered. The lack of regulation of this technology in the US is contrasted with existing legislation in other countries, and the need for national and international consensus regarding appropriate uses of PGD is emphasized.
Legal Cases
2: J Med Ethics. 2003 Aug;29(4):213-6. Comment in:
J Med Ethics. 2003 Aug;29(4):217-9.
Extending preimplantation genetic diagnosis: medical and non-medical uses. Robertson JA.
Law School, University of Texas, 727 Dean Keeton Street, Austin, Texas, USA. jrobertson@mail.law.utexas.edu
New uses of preimplantation genetic diagnosis (PGD) to screen embryos prior to transfer raise ethical, legal, and policy issues that deserve close attention. Extensions for medical purposes, such as to identify susceptibility genes, late onset disease, and human leukocyte antigen (HLA) matching, are usually ethically acceptable. Whether embryo screening for gender, perfect pitch, or other
non-medical characteristics are also acceptable depends upon the parental needs served and the harm posed to embryos, children, and society. Speculations about potential future uses of PGD should not prevent otherwise acceptable current uses of PGD.
2: Hum Reprod Update. 2003 Jul-Aug;9(4):397-404. Evolving ethics in medically assisted reproduction. Pennings G, de Wert G.
Free University Brussels, Department of Philosophy, Pleinlaan 2, 1050 Brussels, Belgium.
Ethical problems arising from the application of assisted reproductive technology are discussed for four specific areas, namely embryo research, multiple pregnancies, preimplantation genetic diagnosis (PGD) for social sexing, and finally PGD with HLA typing.
Review
3: Hum Fertil (Camb). 2003 Feb;6(1):23-5.
Use of preimplantation genetic diagnosis to produce tissue donors: an irreconcilable dichotomy?
Gavaghan C.
School of Law, University of Glasgow, Glasgow G12 8QQ, Scotland, UK. In 2002, the Human Fertilisation and Embryology Authority (HFEA) published its decision in the case of Raj and Shahana Hashmi. The couple had sought to use preimplantation genetic diagnosis (PGD) to have a child that could be a viable donor for their son, Zain, who has thalassaemia. The HFEA decided that PGD could, in the present case, go ahead. Later in 2002, the HFEA reached the opposite decision in the superficially similar case of Michelle and Jayson Whitaker. This paper will present a critical overview of the decisions of the
HFEA in these two cases, and of the opinions and discussions the HFEA published in support thereof. Although it is acknowledged that the two cases differ to
some extent in their facts, it is argued that the difference upon which the HFEA relied is one without ethical significance.
Case Reports Review
4: Hum Reprod. 2003 Mar;18(3):465-71. Comment in:
Hum Reprod. 2003 Jul;18(7):1368-9.
Extending preimplantation genetic diagnosis: the ethical debate. Ethical issues in new uses of preimplantation genetic diagnosis.
Robertson JA.
School of Law, The University of Texas, 727 Dean Keeton Street, Austin, Texas, USA. jrobertson@mail.law.utexas.edu
The use of preimplantation genetic diagnosis (PGD) to screen embryos for
the past year for screening embryos for susceptibility to cancer, for late-onset diseases, for HLA-matching for existing children, and for gender. These extensions have raised questions about their ethical acceptability and the adequacy of regulatory structures to review new uses. This article describes current and likely future uses of PGD, and then analyses the ethical issues posed by new uses of PGD to screen embryos for susceptibility and late-onset conditions, for HLA-matching for tissue donation to an existing child, and for gender selection. It also addresses ethical issues that would arise in more speculative scenarios of selecting embryos for hearing ability or sexual orientation. The article concludes that except for sex selection of the first child, most current extensions of PGD are ethically acceptable, and provides a framework for evaluating future extensions for nonmedical purposes that are still speculative.
Review
5: Prenat Diagn. 2002 Dec;22(12):1117-22.
Issues and concerns of couples presenting for preimplantation genetic diagnosis (PGD).
Katz MG, Fitzgerald L, Bankier A, Savulescu J, Cram DS.
Monash Institute of Reproduction and Development, Monash University, Clayton, VIC 3168, Australia. mandy.katz@med.monash.edu.au
BACKGROUND: The use of preimplantation genetic diagnosis (PGD) to select genetically 'normal' human embryos and to transfer them to the uterus of a woman has generated considerable controversy. Debate has occurred over the
implications of PGD, sex selection, safety of embryonic manipulation and eugenics. This study evaluates a range of social and moral concerns of couples towards PGD and assisted reproductive technologies (ART) prior to treatment to obtain unbiased authentic attitudes independent of the treatment cycle and the outcome. METHODS: A total of 121 subjects were administered a structured questionnaire after each couple's in vitro fertilization (IVF) or genetic
counselling session. Group A consisted of 41 subjects presenting for PGD of single gene disorders (PGD-SG) and group B consisted of 48 subjects undertaking PGD for aneuploidy screening (PGD-AS). A control group consisted of 32 subjects that were about to commence their first IVF cycle. RESULTS AND DISCUSSION: All groups found PGD to be a highly acceptable treatment. They expressed little concern about its extension to testing non-disease states such as sex and they were strongly in favour of a shared decision-making model in which couples have considerable autonomy over decisions about the embryo(s) to transfer.
Differences between the groups included issues surrounding the transfer of embryos, restrictions to PGD and the destruction of embryos.
6: Bioethics. 2001 Oct;15(5-6):413-26.
Procreative beneficence: why we should select the best children. Savulescu J.
Ethics Program, The Murdoch Children's Research Institute, Royal Children's Hospital, Flemington Rd, Parkville, Melbourne, Victoria 3052, Australia. savulesj@cryptic.rch.unimelb.edu.au
(IVF) and preimplantation genetic diagnosis (PGD). While PGD is currently being employed for the purposes of detecting chromosomal abnormalities or inherited genetic abnormalities, it could in principle be used to test any genetic trait such as hair colour or eye colour. Genetic research is rapidly progressing into the genetic basis of complex traits like intelligence and a gene has been identified for criminal behaviour in one family. Once the decision to have IVF is made, PGD has few 'costs' to couples, and people would be more inclined to use it to select less serious medical traits, such as a lower risk of developing Alzheimer Disease, or even for non-medical traits. PGD has already been used to select embryos of a desired gender in the absence of any history of sex-linked genetic disease. I will argue that: (1) some non-disease genes affect the likelihood of us leading the best life; (2) we have a reason to use information which is available about such genes in our reproductive decision-making; (3) couples should select embryos or fetuses which are most likely to have the best life, based on available genetic information, including information about
non-disease genes. I will also argue that we should allow selection for non-disease genes even if this maintains or increases social inequality. I will focus on genes for intelligence and sex selection. I will defend a principle which I call Procreative Beneficence: couples (or single reproducers) should select the child, of the possible children they could have, who is expected to have the best life, or at least as good a life as the others, based on the relevant, available information.
7: Haemophilia. 2002 May;8(3):268-72.
Ethical issues in the genetic aspects of haemophilia. Shenfield F.
Reproductive Medicine Unit, EGA/UCH, London, UK. mfi@easynet.co.uk The aim of this paper is to put some of the ethical considerations concerning the genetic aspects of haemophilia not only in the national, but also in the international context, especially from the point of view of human rights. Particular attention is given to the issues pertaining to consent from children, and the respect for their autonomy within family relationships. This will be analysed within the context of genetic screening and testing, as well as codes of practice and guidelines. The specific issues around prenatal diagnosis in general and pre-implantation genetic diagnosis (PGD) are also discussed. Review
8: Hastings Cent Rep. 2002 Mar-Apr;32(2):6.
Sex selection: final word from the ASRM Ethics Committee on the use of PGD. Robertson J.
Publication Types: News
9: Hum Reprod. 2002 Mar;17(3):534-8.
Ethical considerations on preimplantation genetic diagnosis for HLA typing to match a future child as a donor of haematopoietic stem cells to a sibling. Pennings G, Schots R, Liebaers I.
Department of Philosophy, Lok. 5 C 442, Academic Hospital, Free University Brussels, Pleinlaan 2, B-1050 Brussels, Belgium. gpenning@vub.ac.be Recently, several requests were made by couples with an affected child who wanted preimplantation genetic diagnosis (PGD) to select embryos in the hope of conceiving an HLA identical donor sibling. This article considers the ethical arguments for and against the application of PGD for this goal. Only embryos HLA matched with an existing sibling in need of a compatible donor of haematopoietic stem cells would be transferred. The main arguments are the instrumentalization of the child, the best-interests standard, the postnatal test for acceptability and the experience of the donor child. It is argued that conceiving a child to save a child is a morally defensible decision on the condition that the
operation that will be performed on the future child is acceptable to perform on an existing child. The instrumentalization of the donor child does not
demonstrate disrespect for its autonomy or its intrinsic worth. Review
Part 2.2 – PubMed
Search terms entered: bone marrow transplant ethics
1: Monash Bioeth Rev. 2003 Oct;22(4):45-55.
Tissue typing for bone marrow transplantation: an ethical examination of some arguments concerning harm to the child.
Grundell E.
Faculty of Law, University of Melbourne, Australia.
Tissue typing (TT) is a recent and controversial scientific advance. Whilst its current applications can easily be described as pro-therapeutic and within the realms of preventative medicine, its specificity and potential are often
characterized as the tip of the eugenic iceberg: undermining the very basis of individual autonomy and identity in an inevitable march towards the perfect society. In addition to arguments concerning societal harms flowing from TT, significant concerns have also been raised concerning harms to the future child born as a result. In the context of current legislation and policy, this article examines two aspects of arguments concerning harm to the future child: those relating to psychological harms, and those arguing that TT is contrary to the future child's best interests. The article examines the moral basis for arguments concerning harm to the future child. It proposes that arguments concerning psychological harm may overlook or minimise the potential benefits flowing from the broader social, familial context into which the child is born. These arguments may be countered, or at least balanced, by considering the future child in this context. In relation to arguments that TT is contrary to the future child's best interests, the paper examines a non-standard
consideration of best interests. It argues that this standard should be used in considering whether or not TT for bone marrow transplant is harmful to the future child, thereby extending moral consideration of interests to
intra-familial interests and outcomes. On this basis, it can be argued that TT is not contrary to the interests of the future child. The paper concludes by noting a potential tension between the first guiding principle of the Infertility Treatment Act 1995 (Vic) and the current Victorian policy on TT.
2: Bone Marrow Transplant. 1997 Jun;19(12):1163-8.
Transplant of bone marrow and cord blood hematopoietic stem cells in pediatric practice, revisited according to the fundamental principles of bioethics.
Burgio GR, Locatelli F.
Department of Pediatrics, University of Pavia, IRCCS Policlinico San Matteo, Italy.
The two most widely used sources of hematopoietic stem cells for allogeneic transplants in pediatric practice are bone marrow (BM) and cord blood (CB). While bone marrow transplantation (BMT) is reaching its 30th year of
application, human umbilical cord blood transplantation (HUCBT) is approaching its 10th. Although these procedures have basically the same purpose, a number of biological differences distinguish them. In particular, the intrinsically
limited quantity of CB stem cells and their immunological naivete confer peculiar characteristics to these hematopoietic progenitors. From a bioethical point of view, the problems which have repeatedly been raised when the BM donor
is a child are well-known. Different but no less important ethical problems are raised when one considers HUCBT; in this regard the most important issues are the easier propensity of programming a CB donor in comparison with a BM donor (clearly due to the shorter time interval needed to collect the hematopoietic progenitors); the in utero HLA-typing; the implication of employing 'blood belonging to a neonate' for a third party; the need to perform a number of investigations both on the CB of the donor and on the mother and the
implications that the discovery of disease may have for them, but also the need to establish banks for storing CB, with the accompanying administration and management problems. All these different aspects of UCBT will be discussed in the light of the four fundamental and traditional principles of bioethics,
namely autonomy, nonmaleficence, beneficence and justice. Review
3: Br Med Bull. 1997;53(4):921-39. The ethics of organ donation. Dunstan GR.
Department of Theology, University of Exeter, UK.
As organ transplantation is physically possible within a tension between common biological properties and individual immunities, so it is ethically possible
within a tension between individual personality in full integrity and the human community of which each member, social by nature, is an organic part. Ethical donation is by consent, explicit or presumed, spontaneously offered or procured by request. Altruism or commercial dealing is now a live issue in organ
procurement, whether cadaveric or by live donation, related or unrelated. Attention is given to children in transplantation, and to new developments with fetal organs, neural tissue, bone marrow and xenografts. Given all that medical science and skill can now offer, patients are still free to decline.
Review
4: Bone Marrow Transplant. 1996 Nov;18 Suppl 2:8-12. Ethical problems in bone marrow transplantation in children. Massimo L.
Department of Pediatric Hematology and Oncology-G.Gaslini Children's Research Hospital, Genova-Italy.
The medical staff caring for children with hematological or oncological diseases is often faced with delicate ethical and, at times, legal problems. Although many of these are common to other branches of pediatrics where patients are children lacking decision-making capacity, others, such as bone marrow transplantation (BMT), are peculiar to this specialty. This is a vanguard treatment for a wide range of diseases that are either incurable or resistant to conventional therapies. If the patient does not have a related donor, ethical and legal problems can occur: profound emotional dilemmas arise both because of the fretful search for a donor and because of the limited period the patient can be transplanted with good expectations of success. National and International Registries are linked to all BMT Units for the identification of compatible donors with the recipient. Hospitals hosting a BMT Unit must fulfill several requirements which are crucial to guaranteeing the best results when faced with
the complexity and aggressiveness of transplantation and possible complications, such as a blood bank, an infectious diseases department, a rehabilitation unit, the availability of consultants, as well as playworkers, teachers, psychologists and social workers. Any trial carried out in a Center without sufficient
experience, simply pleading the concept of "last hope" is not ethical, even considering possible late effects and sequelae. For allogeneic bone marrow transplantation it is necessary to obtain both the Consent of the donor and the Consent of parents of the recipient. Often the donor is a child sibling of the patient, lacking decision-making capacity as well. Information to parents of both children must be detailed. In reality, there are practically no risks for the child donor and, if any, they are linked to the general anaesthesia. The text of the Informed Consent is usually deliberated and accepted in advance by the Ethics Committee of the Institution where the patient is followed. Voluntary donor's Consent is required at different steps: at the entry in the Registry,
when typing of major histocompatibility complex, at bone marrow harvesting under general anaesthesia. In Italy, Article No. 3, Law No. 107 of May 4, 1990 allows parents or legal guardians to consent to the bone marrow donation of a minor. Review
5: BMJ. 1996 Jul 6;313(7048):50.
Volunteering children for bone marrow donation. Children may be able to make their own decisions.
Alderson P, Montgomery J. Letter
6: BMJ. 1996 Jul 6;313(7048):49-50.
Volunteering children for bone marrow donation. Studies show large discrepancies between views of surrogate decision makers and patients.
Kent G. Letter
7: Obstet Gynecol Surv. 1995 Aug;50(8):611-7. Umbilical cord blood for use in transplantation. Varadi G, Elchalal U, Shushan A, Schenker JG, Nagler A.
Department of Bone Marrow Transplantation, Hadassah University Hospital Jerusalem, Israel.
Bone marrow transplantation has rapidly progressed over the last two decades offering cure and prolonged disease-free survival for patients suffering from certain hemato-oncological malignancies or metabolic disorders. However, bone marrow transplantation is limited by the paucity of major histocompatibility loci antigen (HLA)-matched donors, and the morbidity and mortality due to graft-versus-host disease. Recently it has been shown, that umbilical cord blood represents a unique source of transplantable hematopoietic progenitor cells. Currently, human umbilical cord blood from a newborn sibling has been used successfully for hematopoietic reconstitution of approximately 40 children with congenital or malignant diseases. Establishment of umbilical cord blood banks
might alleviate some of the problems associated with bone marrow
transplantation. The developments in this field which have occurred during the last decade, as well as the importance of cooperation between the obstetric and transplantation staff, are discussed in this review. Certain ethical problems remain surrounding the issue of using human umbilical cord blood for allogeneic transplantation which must be addressed.
Review
8: Bone Marrow Transplant. 1995 May;15(5):657-8.
Ethical issue of bone marrow transplantation for thalassemia. Giardini C.
Editorial. No abstract available.
9: Semin Oncol Nurs. 1994 Feb;10(1):58-63. Ethical issues in bone marrow transplantation. Downs S.
Baptist Cancer Center, Nashville, TN 37203.
Ethical issues in health care arise from the perspectives of individual rights and clinical research. The advances in technologies for the treatment of cancer that come from clinical research have created new ethical issues. Bone marrow transplantation is such a case where research has the potential to benefit, but our resources to provide this lifesaving option are scarce. Ethical issues that nurses face in BMT include informed consent, concerns about the rights of donors, and the allocation of resources.
Review
10: Blood Rev. 1993 Mar;7(1):4-9.
Bone marrow transplant for sickle cell disease--the dilemma. Davies SC.
Department of Haematology, Central Middlesex Hospital, London, UK. Sickle cell disease is the family of clinically significant haemoglobin
disorders which have in common the inheritance of the sickle beta haemoglobin chain gene. The homozygous SS condition, also known as sickle cell anaemia, can present a varied clinical picture from asymptomatic through to frequent painful vaso-occlusive crises and even death as a result of complications of the
disease. S beta zero thalassaemia and the rate haemoglobin SD disease present a similar picture to SS, while S beta plus thalassaemia and haemoglobin SC disease generally have milder clinical features than SS and present somewhat later in life. The present debate about bone marrow transplant (BMT) for sickle cell disease, among both physicians and community, relates to SS patients, definition and markers of disease severity, the effect of BMT on sickle related organ damage, the efficacy of BMT for SS, and its complications, both early and long-term.
11: J Med Ethics. 1992 Sep;18(3):125-7, 141. Baby marrow: ethicists and privacy.
Zucker A. Ohio University.
A family had a child in large part to use its marrow in the hopes of saving the life of an older child afflicted with leukaemia. Public response from medical ethicists was negative. This paper argues that what the family did was not clearly wrong and that the ethicists should not have made public pronouncements calling the morals of the family into question.
Case Report
12: J Clin Epidemiol. 1992 Jul;45(7):799-801. When philosophers shoot from the hip. Rachels J.
Department of Philosophy, University of Alabama, Birmingham 35294. PIP: A visible result of the 20-year old applied ethics movement is the use of moral philosophers as quotable newspaper sources. In situations like the op-ed page, adequate space and time allows for serious reflection, and the columns provide accessible, quality ideas for the general public. Quality usually
disappears when the newspaper interviews an ethicists for the next day's story. Reporters want a short, pithy quote, confirming their belief that alarming
events really are alarming events. A conservative viewpoint usually results: new developments become troubling, not because of careful analysis, but because it challenges accepted wisdom. The New York times provided readers with immediate resistance to the idea that a family may decide to have a 2nd child in the hopes that that child will provide compatible bone marrow cells (a 1 in 4 chance) needed to save the life of the 1st-born child after a 2-year search for a suitable donor, with plans to love their baby. The Times quoted an ethicist saying: "It's outrageous that people would go to this length." But consider the question. Is it really better to let the older child die for some vague ethical fear? Parents choose to reproduce for many reasons unrelated to the unrealistic ideal of wanting to have a child solely for "that child's own
welfare...each person [being] an end in...herself..." As commentators of public events, philosophers would do well to challenge the prevailing orthodoxy, questioning assumptions unthinkingly made. Instead they frequently serve as orthodoxy's most sophisticated defenders, assuming that the existing social consensus must be right and articulating its theoretical "justification." Or they rely on the "slippery slope" doctrine of fear, where departure form
business-as-usual leads inextricably to frighteningly extreme consequences. The silliness of previous facile ethical pronouncements suggests the need for future caution.
13: Clin Res. 1990 Dec;38(4):694-700.
Bone marrow transplantation in sickle cell disease: the trade-off between early mortality and quality of life.
Kodish E, Lantos J, Siegler M, Kohrman A, Johnson FL.
Center for Clinical Medical Ethics (CCME), University of Chicago, Pritzker School of Medicine, IL 60637.
14: J Clin Ethics. 1990 Summer;1(2):99-103; discussion 103-7. Conceiving a child to save a child: reproductive and filial ethics. Jecker NS.
Department of Medical History and Ethics, University of Washington School of Medicine.
I conclude that Mary and Abe's decision to conceive a child to save a child does not impose harm on persons or on relationships in the family. Nor does it evince a lack of respect for the child they have conceived. The ethical guidelines that support this conclusion can now be summarized. First, actions should not depersonalize or otherwise endanger personal relationships. Second, although ideally personal relationships are initiated and continued for their own sake, after a personal relationship has been established and sustained the motives for establishing it recede in importance. Third, the requirement of honesty looms especially large in the context of personal relationships. Fourth, privacy protects personal relationships in the family from intrusion by the state. Fifth, even if those with whom we stand in personal relationships are not fully rational or self-conscious, we should treat them with respect. Finally, persons often are called upon to make greater sacrifices in personal relationships. These principles represent only the barest beginnings of an ethics for filial relationships. Nonetheless, they mark progress in the direction of developing a more complete account. We should not suppose that ethics in the family always will be spontaneous or "natural". Over a century ago, Mill warned that nature and natural are "one of the most copious sources of false taste, false
philosophy, false morality, and even bad law". Especially in the wake of medical advances, such as recombinant DNA and new reproductive technologies, the complexity of filial ethics will only increase. The demographics of an aging society will add further complexity to filial contexts.(ABSTRACT TRUNCATED AT 250 WORDS)
Part 3
1. Spital, Aaron‘Donor Benefit is the key to justified living organ donation’ Cambridge Quarterly of Healthcare Ethics (2004), 13:105-109
Spurred by a severe shortage of cadaveric organs, there has been a marked growth in living organ donation over the past several years. This has stimulated renewed interest in the ethics of this practice. The major concern has always been the possibility that a physician may seriously harm one person while trying to improve the well-being of another. As Carl Elliott points out, this puts the donor's physician in a difficult predicament: when evaluating a person who volunteers to donate an organ, “a doctor is in the position of deciding not simply whether a subject's choice is reasonable … but whether he [the doctor] is morally justified in helping the subject accomplish it.”1 This question has become even more difficult since the
introduction of living donor operations that are more risky than living kidney donation (e.g., adult-to-adult liver donation) and the suggestion that volunteers at added risk may sometimes be acceptable.2 So, how can we decide when the risk is too much?
2. Sheldon, Mark
‘Guest Editorial: Children as Organ Donors: A Persistent Ethical Issue’ Cambridge Quarterly of Healthcare Ethics (2004), 13:119-122
When I started doing clinical ethics rounds, in the mid 1980s, I decided to venture onto the pediatrics ward. The first patient I encountered was a 3-year-old girl returning to her room, groggy from general anesthesia. When I inquired about her, the nurse explained that she had just gone through the procedure to donate bone marrow for her 1-year-old sister, who was preparing to undergo bone marrow transplantation for leukemia.
3. Zinner, Susan
‘Cognitive Development and Pediatric Consent to Organ Donation’ Cambridge Quarterly of Healthcare Ethics (2004), 13:125-132
Attempting to balance the needs and interests of minors with the obligation to protect them from their own potentially harmful decisions poses an ethical challenge for the physician. This problem is further exacerbated when the context is not medical treatment but organ donation. That is, medical treatment scenarios generally involve decisions likely to result in objective improvements to the minor's health status. Consent to organ donation, however, raises several vexing problems. First, how should the provider measure both the cognitive ability and competence to consent of the minor to ensure that the minor comprehends the risks and benefits of donation and that no coercion is involved? Second, given that improvement of one's health is an unlikely scenario, is there a way to measure subjective determinations of satisfaction and altruism enjoyed by a minor following organ donation? If so, should the physician regard these values in a manner analogous to physical improvement? Finally, are parents the appropriate decisionmakers for their children when a sibling-to-sibling donation occurs? Is it possible for parents to always act in the best interests of both children in this event?
4. Jansen, Lynn A.
‘Child Organ Donation, Family Autonomy, and Intimate Attachments’ Cambridge Quarterly of Healthcare Ethics (2004), 13:133-142
What standard or principle should guide decisionmaking concerning the permissibility of allowing children to be organ donors? For a long time, it has been widely assumed that the best interest of the child is the appropriate standard. But recently, several critics have charged that this standard fails to give due weight to the interests of the family and the intimate relationships that the family makes possible.1,2 This article reviews and rejects both the best-interest standard (as it has been traditionally conceived) and the alternative standard recommended by the critics. I then propose a new standard to help parents, healthcare professionals, and judges decide when it is and is not permissible for children to serve as organ donors. This new standard modifies and broadens the best-interest standard to allow it to account adequately for the contribution that intimate relationships make to the well-being of children.
5. Ekman Ladd, Rosalind
‘The Child as Living Donor: Parental Consent and Child Assent’ Cambridge Quarterly of Healthcare Ethics (2004), 13:143-148
Despite the much-discussed court cases in the 1970s that permitted some sibling-to-sibling kidney donations from minors,1 principles that can guide parental, medical, or judicial decisionmaking are neither clearly articulated nor uncontroversial.
6. Pentz, Rebecca D., Chan, Ka Wah, Neumann, Joyce L., Champlin, Richard E., and Korbling, Martin
‘Designing an Ethical Policy for Bone Marrow Donation by Minors and Others Lacking Capacity’
Cambridge Quarterly of Healthcare Ethics (2004), 13:149-155
The child was 2 years, 8 months old and weighed 25 pounds, one-fifth the weight of her mother, for whom she was to be the bone marrow donor. The mother had suffered a relapse of acute myelogenous leukemia; her physicians recommended a bone marrow transplant. The child was the closest human leukocyte antigen (HLA) match and thus the best donor candidate for her mother's transplant.
7. Holm, Søren
‘The Child as Organ and Tissue Donor: Discussions in the Danish Council of Ethics’ Cambridge Quarterly of Healthcare Ethics (2004), 13:156-160
At the end of 1999 the Danish Council of Ethics published a report on organ and tissue donation from living donors. The report focused on kidney and bone marrow transplantations (BMTs), as these are presently the most common transplantations from live donors. During the work on the report, it became clear to the Council that, apart from problems concerning coercion and commercialization that affected both adult and child donors, by far the largest ethical problems occurred in donations from children.
8. Fleck, Leonard M.
‘Children and organ donation: some cautionary remarks’ Cambridge Quarterly of Healthcare Ethics (2004), 13:161-166
My task is to provide some critical commentary on the preceding essays. My unfortunate conclusion will be that the issues that are their primary focus are more likely to become more ethically intractable over the next several years as medicine progresses. I do not see any easy or obvious way to avoid this conclusion.
9. Spital, Aaron
‘Intrafamilial organ donation is often an altruistic act’ Cambridge Quarterly of Healthcare Ethics (2003), 12:116-118
In their recent article, Glannon and Ross remind us that family members have obligations to help each other that strangers do not have. They argue, I believe correctly, that what creates moral obligations within families is not genetic relationship but rather a sharing of intimacy. For no one are these obligations stronger than they are for parents of young children. This observation leads the authors to the logical conclusion that organ donation by a parent to her child is not optional but rather a prima facie duty. However, Glannon and Ross go a step further by suggesting that because parent-to-child organ donation is a duty, it cannot be altruistic. They assert that “altruistic acts are optional, nonobligatory…supererogatory…. Given that altruism consists in purely optional actions presupposing no duty to aid others, any parental act that counts as meeting a child's needs cannot be altruistic.” Here I think the authors go too far.
10. Herissone-Kelly, Peter
‘Bioethics in the United Kingdom: Genetic Screening, Disability Rights, and the Erosion of Trust’
Cambridge Quarterly of Healthcare Ethics (2003), 12:235-241
It goes almost without saying that there are no academic bioethical debates that are unique to the United Kingdom. The debates in which U.K. bioethicists become involved take place in international journals and in books with a worldwide readership. The contributions of those from these shores are frequently made in response to work by academics from the United States, Australia, Scandinavia, and a whole host of other countries.
11. Chambers, Jean E.
‘Women's Right to Choose Rationally: Genetic Information, Embryo Selection, and Genetic Manipulation’
Cambridge Quarterly of Healthcare Ethics (2003), 12:418-428
Margaret Brazier has argued that, in the literature on reproductive technology, women's “right” to reproduce is privileged, pushed, and subordinated to patriarchal values in such a way that it amounts to women's old “duty” to reproduce, dressed up in modern guise. I agree that there are patriarchal assumptions made in discussions of whether women have a right to select which embryos to implant or which fetuses to carry to term. Forcing ourselves to see women as active, rational decisionmakers tends to counteract any lingering patriarchal assumptions. But rational decisionmaking requires information. Voting wisely requires information about the candidates. Taking women's reproductive rights seriously means taking seriously women's
need for relevant information to make rational decisions, including decisions about which embryos to implant or alter. I argue that preimplantation genetic profiles and prenatal test information should be made available to prospective parents, especially prospective mothers, unless doing so threatens to harm the resulting child or the larger society in specifiable and important ways.
12. Glannon, Walter and Ross, Lainie Friedman
‘Do Genetic Relationships Create Moral Obligations in Organ Transplantation?’ Cambridge Quarterly of Healthcare Ethics (2002), 11:153-159
In 1999, a case was described on national television in which a woman had enlisted onto an international bone marrow registry with the altruistic desire to offer her bone marrow to some unidentified individual in need of a transplant. The potential donor then was notified that she was a compatible match with someone dying from leukemia and gladly donated her marrow, which cured the recipient of the disease. Years later, though, the recipient developed end-stage renal disease (ESRD), a consequence of the high-dose chemotherapy she received earlier to destroy her stem cells and prepare her for the bone marrow transplant. Finding a suitable donor for a kidney transplant proved extremely difficult. Desperate, she requested that the donor registry personnel help her locate the individual who earlier was determined to be a compatible donor and asked this now-identifiable individual to consider donating one of her two normally functioning kidneys for a kidney transplant.
13. Aulisio, Mark P., May, Thomas, Block, Geoffrey D.
‘Procreation for Donation: The Moral and Political Permissibility of “Having a Child to Save a Child”’
Cambridge Quarterly of Healthcare Ethics (2001), 10:408-419
The crisis in donor organ and tissue supply is one of the most difficult challenges for transplant today. New policy initiatives, such as the driver's license option and required request, have been implemented in many states, with other initiatives, such as mandated choice and presumed consent, proposed in the hopes of ameliorating this crisis. At the same time, traditional acquisition of organs from human cadavers has been augmented by living human donors, and nonheartbeating human donors, as well as experimental animal and artificial sources. Despite these efforts, the crisis persists and is perhaps most tragic when it threatens the lives of children, driving parents to sometimes desperate measures. Herein, we address one very controversial step some parents have taken to obtain matching tissue or organs for their needy children—that is, having a child, in part, for the purpose of organ or tissue procurement.
14. Gavaghan, Colin
‘Deregulating the Genetic Supermarket: Preimplantation Screening, Future People, and the Harm Principle’
Cambridge Quarterly of Healthcare Ethics (2000), 9:242-260
Robert Nozick, in what is surely one of the most intriguing and provocative footnotes in modern philosophical writing, referred in Anarchy, State and Utopia to the notion of a “genetic supermarket.” In keeping with the central arguments of that text, his suggestion was that choices about the genetic composition of future generations should, as far as possible, be left in the hands of private individuals, and should not be determined or restricted by the state.
This free market in genetic screening would meet “the individual specifications (within certain moral limits) of prospective parents,” and would possess “the great virtue that it involves no centralized decision fixing the future human type(s).” In short, prospective parents would be allowed, to whatever extent was rendered possible by current technology, to choose the genetic traits of their future children.
15. De Melo-Martin, Inmaculada
‘On our obligation to select the best children: a reply to Savulescu’ Bioethics (2004) 18 (1) 72-83
The purpose of this paper is to examine critically Julian Savulescu's claim that people should select, of the possible children they could have, the one who is expected to have the best life, or at least as good a life as the others, based on the relevant, available genetic information, including information about non-disease genes. I argue here that in defending this moral obligation, Savulescu has neglected several important issues such as access to selection technologies, disproportionate burdens on women, difficulties in determining what is best, problems with aggregate effects of individual choices, and questions about social justice. Taking these matters into account would call such a moral requirement into serious question. 16. Harris, John and Holm, Søren
‘Should we presume moral turpitude in our children? – Small children and consent to medical research’
Theoretical Medicine and Bioethics (2003) 24 (2): 121-129
When children are too young to make their own autonomous decisions, decisions have to be made for them. In certain contexts we allow parents and others to make these decisions, and do not interfere unless the decision clearly violates the best interest of the child. In other contexts we put a priori limits on what kind of decisions parents can make, and/or what kinds of considerations they have to take into account. Consent to medical research currently falls into the second group mentioned here. We want to consider and ultimately reject one of the arguments put forward for putting medical research into the second category. We will argue that some objections to children's participation in research are either based on an implausibly restrictive conception of what is in fact in the child's best interests or that there is an implicit and false premise hidden in this argument; i.e., the premise that our children have so deeply fallen into moral turpitude that we must assume that they would not want to fulfill their moral obligations, or, that they will grow up to be morally deficient and will then wish not to have acted well while a child.
17. Pennings, Guido and de Wert, Guido
‘Evolving ethics in medically assisted reproduction’ Human Reproduction Update (2003) Vol.9, No.4 pp.397-404
Ethical problems arising from the application of assisted reproductivetechnology are discussed for four specific areas, namely embryoresearch, multiple pregnancies,
preimplantation genetic diagnosis(PGD) for social sexing, and finally PGD with HLA typing. 18. Pennings, G.
Reproductive tourism as moral pluralism in motion J Med Ethics (2002);28:337-341
Reproductive tourism is the travelling by candidate servicerecipients from one institution, jurisdiction, or country wheretreatment is not available to another institution, jurisdiction,or country where they can obtain the kind of medically assistedreproduction they desire. The more widespread this phenomenon,the louder the call for international measures to stop thesemovements.
Three possible solutions are discussed: internal moral pluralism,coerced conformity, and international harmonisation. The positionis defended that allowing reproductive tourism is a form oftolerance that prevents the frontal clash between the majoritywho imposes its view and the minority who claim to have a moralright to some medical service. Reproductive tourism is moralpluralism realised by moving across legal borders. As such,this pragmatic solution presupposes legal diversity.
19. Robertson, J.A.
‘Extending preimplantation genetic diagnosis: medical and non-medical uses’ J Med Ethics 2003;29:213-216
New uses of preimplantation genetic diagnosis (PGD) to screenembryos prior to transfer raise ethical, legal, and policy issuesthat deserve close attention. Extensions for medical purposes,such as to identify susceptibility genes, late onset disease,and human leukocyte antigen (HLA) matching, are usually ethicallyacceptable. Whether embryo screening for gender, perfect pitch,or other non-medical characteristics are also acceptable dependsupon the parental needs served and the harm posed to embryos,children, and society.
Speculations about potential future usesof PGD should not prevent otherwise acceptable current usesof PGD.
20. Ashcroft, R.
‘Bach to the future: response to: Extending preimplantation genetic diagnosis: medical and non-medical uses’
J Med Ethics 2003;29:217-219
Professor Robertson sketches an elegant framework for policyevaluation and regulation of the use of preimplantation geneticdiagnosis for various medical, medical related, and non-medicalpurposes. In criticism of his position, I argue that the distinctionbetween policy and ethics upon which his argument relies ishighly unstable, and the approach taken to ethical evaluationof particular parental interests leaves open many issues whichthe policy approach would hope to exclude. In conclusion I arguethat while his position ultimately fails, the onus is on hiscritics to come up with a viable and satisfying alternative.
21.Lynn Gillam, Book Review
Pure Selection: The Ethics Of Pre-Implantation Genetic Diagnosis And Choosing Children Without Abortion
Christian Munthe, Göteborg, Acta Universitatis Gothoburgensis, 1999, 310 pages, 180 Kroner.
J Med Ethics 2001; 27:415-416
This book investigates the issue of "pure selection"–thatis, choosing the genetic
selectionis made possible by the relatively new technology of preimplantationgenetic diagnosis (PGD), in conjunction with now-routine IVFprocedures for creating embryos. In PGD, a cell or cells canbe extracted from an early embryo, and be subjected to genetic diagnosis of whatever kind, without damaging the embryo. Soembryos with the genetic make up favoured by the parents-to-becan be identified and transferred to the uterus, whilst those with non-favoured genetic make up can be discarded. Hence choiceabout the genetic characteristics of children is achieved withoutrecourse to invasive procedures for prenatal diagnosis, andwithout termination of pregnancy, which is not only physicallyinvasive, but also ethically controversial.
The author firstly presents a case study of the events involvedin the introduction of PGD into clinical practice in Sweden,and then proceeds to a thorough, at times almost too thorough, examination of the ethical arguments for and against use ofPGD for pure selection. From the broad ground covered in thisbook, I want to pick one issue which I find to be of particular interest. This is the central moral question of whether thereis anything morally wrong with discarding embryos which arenot selected.
As Munthe points out, PGD is only preferable to selective abortionas a method of selection if the disposal of unwanted embryosis ethically neutral, or at least less problematic than abortionof a fetus. It is often simply assumed that this is so, butMunthe challenges the reader to seek an argument for it. Interestingly,he considers in detail not the Catholic-style objection to embryodestruction (namely, that the embryo is morally a person fromthe moment of conception), but possible utilitarian objections.The most significant fact about both embryos and fetuses, froma utilitarian point of view, is the consequence of destroyingthem, namely that a person's life has been prevented from existing.Hence, except in the case of the most severe genetic diseasein which the life would consist of more suffering than happiness,a significant amount of utility has been lost. Moreover, asMunthe observes, PGD typically involves the destruction of severalembryos, whereas abortion involves only one fetus–andthe numbers always count for utilitarians. So are utilitarianslogically required to object to pure selection using PGD?
Munthe advances several arguments to show that this is not necessarilyso, the most compelling of which is the replaceability argument–thatthe lost life of the discarded embryo will be replaced by thelife produced by the embryo selected for, and that replacementlife will have more happiness than the lost life, even if onlyby a relatively small margin. But he also explores the fundamentalproblem of the utilitarian approach to the value of future lives.The utilitarian seems left with the unpalatable choice between,on the one hand, saying there is an obligation to create moreand more people whose lives will be only marginally better thanno life at all (Parfit's repugnant conclusion), or on the otherhand, allowing that the only harms that matter are those doneto already existing people, which means there is nothing wrong with deliberately bringing into the world a child with a significantdisability (since that child would otherwise never have existedat all, and is not harmed by its coming into existence). Thisis Parfit's non-identity problem. Munthe's preferred solutionis to opt for the repugnant conclusion, although, frustratingly,he does not give an argument for this preference.
Thi`s utilitarian approach to the moral evaluation of embryodestruction in pure selection is, in my view, a central featureof this book. My one criticism would be that Munthe does not highlight this enough, but rather presents a whole range ofpossible arguments for and against PGD for pure selection, apparentlygiving all of them equal weight, when some are clearly muchmore to the point than others. On the other hand, the book certainlydoes provide a thorough overview of the ethical issues associatedwith PGD, and would be an excellent starting point for anyonewishing to gain an efficient grasp of the area. The broad coverageof a range of issues means that each one cannot be pursued inas much depth as readers more familiar with the issues mightlike, but, in all fairness, the book cannot be expected to provide both.