1 Hospital University of Pennsylvania, Center Reproductive Medicine and Surgery, 3400 Spruce Street, 106 Dulles Building, Philadelphia, PA and 2 University of Washington School of Law and School of Public Health and Community Medicine, Washington, USA
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Abstract |
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Key words: assisted reproduction/donor anonymity/donor gametes/insemination/oocyte donation
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Introduction |
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Some bioethicists have advocated that couples conceiving through the use of donor gametes be obliged to reveal the fact of their donor conception to their children once they reach the age of understanding, in a manner similar to disclosure to children that are adopted (McGee et al., 2001). Further, they propose disclosure as standard of care in reproductive medicine.
Mandating disclosure by a couple is problematic on a number of fronts. Certainly a pre-eminent concern is the welfare of the child. However, in debates about donor insemination using adoption as a comparison, researchers and policy makers have not provided a consensus on what is in the best interest of the child (Fernandez, 1996; Blyth and Cameron, 1998
).
The claim that the practice of gamete donation is similar to adoption is incorrect for many reasons. With gamete donation, one of the parents is the biological parent, while the other is the social parent; with adoption, both parents are social parents. This difference is not trivial. The `adopted' child has been adopted by a social family as an already created living individual. In the case of gamete donation, what is `adopted' is one of the two gametes. Further, the adopted child, for whatever reason, was relinquished by his/her genetic parents, has found a new loving family and must psychologically confront this relinquishment in understanding the truth of his or her origins. The child who results from use of donor gametes would have to address different psychological issues, having been created in the context of `donation' and a positive desire of the couple to raise the resulting offspring. Certainly donor conception children do not have to come to terms with being rejected by their birth parents, often the case with adopted children.
Finally, with gamete donation, the child's mother, whether biological or not, carries the pregnancy. In such pregnancies, the offspring is incorporated into the mother during fetal growth. In addition to as yet undefined maternal influences during pregnancy, there is continued maternalinfant interaction after birth through breastfeeding and through daily influences that contribute to the full development of human beings. In the case of a donor oocyte, to ask the mother to indicate to the child that technically she is not the mother because she is not genetically related would be unduly burdensome and almost impossible for the child to comprehend. In adoption, the mother does not experience the pregnancy, the pregnancy and birth are not recorded through photographs and other memorabilia and there is no breastfeeding.
In addition to considerations of child welfare, one must address the impact on the other participants in the process, including the donor, the health care providers, and the couple. These interactions are perhaps most starkly understood within the context of mandatory disclosure. In order for a policy requiring disclosure to be truly effective, various conditions need to be satisfied. These include: (i) a couple willing to reveal the origin of the gametes to their offspring; (ii) a donor who is willing to donate his spermatozoa or her oocytes knowing that later he or she may be identified as a segue to mandatory disclosure of gamete origin; (iii) a system of enforcement to ensure that the couple will reveal the source of the gamete (perhaps through the use of a special notation on the birth certificate); (iv) health providers who will restrict reproductive services only to couples who agree to sign a consent for disclosure; (v) assurance that the provider of obstetric care, usually a different physician, is informed by the couple of the means by which reproduction was achieved and made aware of the existence of consent to disclose in order to complete the birth certificate.
This list, by no means complete, makes the issue of disclosure quite complicated. In fact, even in Sweden where the legislation is in effect to provide the child the right to know the identity of the sperm donor, the law has to rely on the parents' openness to reveal the use of donor spermatozoa to their child. So far, unforced parent disclosure has been very low (Gottlieb et al., 2000). The impact on the individual donor and the donor pool cannot be underestimated. Although some sperm banks in the USA currently allow donors the option of revealing their identity to children conceived with their spermatozoa, at the child's request once he or she reaches 18 years of age (e.g. The Sperm Bank of California), such a practice is not yet routine and the impact on the donor, the woman or couple, and the child is not yet understood.
Enforcement of disclosure may also affect donor practices adversely. One of the most commonly reported deterrents to semen donation is the fear of being traced by their future offspring if the law changed (Cook and Golombok, 1995; Murray and Golombok, 2000
). In countries in which the identification of the donor is required, the supply of the specimens for donor insemination within the official mainstream has been compromized. Since the anonymity issue emerged 10 years ago, the total number of sperm donors in the Netherlands has decreased from 900 to 300, the number of sperm banks has halved, and the waiting time for treatment is >2 years (Weber, 2000
). Furthermore, the DutchBelgian society for artificial insemination, which opposes disclosure, cites that only 10 in 45 000 children conceived with artificial insemination have tried to identify their fathers through the courts (Weber, 2000
). Admittedly, there is no way to know how many of the 45 000 were aware that they were the product of a donor insemination, or had they known, would have gone through the courts or at this point are too young to bring a court case.
The use of donor oocytes carries with it a more complex set of issues than does sperm donation. In addition to the physical involvement in ovarian stimulation, multiple blood drawings and oocyte collection, the potential involvement is more complex than for the male donating his gametes. The oocyte donor, usually a young woman, may eventually be a mother herself and knowing that later in life she could be sought out by a child-product of her oocyte donation, could open conflicts regarding her own maternity and her own family life. Things get even more complicated if the same oocyte donor is in the future unable to become pregnant. In this case the disclosure policy may be a significant source of emotional distress for the woman with repercussions on other parties as well.
One could also ask whether disclosure could be used the other way around, i.e. whether donors could later be an unwelcome intervener in family relationships through their attempts to identify their half-offspring, even if the offspring are not interested in knowing their biological origins. Is this `right' of the donor(s) not problematic as well?
Reliance on the law for last resort enforcement of disclosure is likely to be impractical and of minimal benefit to the child's health. Without uniform requirements for the collection and maintenance of records, the usefulness of revealing this information is questionable from a health perspective. Accessing any such records from private clinics and banks is likely to be difficult and certainly the quality of the information contained in them is uneven. In addition, where the child is not in physical harm, courts and legislatures are generally reluctant to intervene in family relationships, including questioning parental judgement about the best interests of the child. Indeed, in the USA in the context of donor insemination, when the child is born within a marital relationship, there is a long history of recognizing the husband of an inseminated woman as the legal father. Although there is no way at present to predict how often legal issues will emerge, the emotional distress and trauma to all those involved in any legal battle surrounding family relationships cannot be overlooked.
To force health care providers to participate in implementing such a requirement is also problematic. Including acquiescence to disclosure as part of screening criteria unjustly interjects social factors (vis-à-vis health factors) into criteria for programme acceptance and encourages desperate couples to lie if they disagree. Any requirement that couples disclose as a prerequisite to treatment runs contrary to the generally accepted understanding of informed consent in the health care setting. In an ideal setting, individuals are provided with full information but retain full authority for choosing how to proceed.
In addition, it would be intrusive and inappropriate to override parental decisionmaking powers that are respected both socially and under the law.
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Conclusions |
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The changing face of genetic technology is cited as a valid reason for demanding disclosure of the origin of the gametes. However, this rationale fails on a number of counts. First, since extensive genetic screening is carried out in most donor programmes, the likelihood of a major genetic problem is substantially less than that in the population as a whole, where premarital and prenatal screening is not demanded. Second, the likelihood of the availability in the not too distant future of health/genetic profiles through testing of individuals, e.g. `DNA chips', will reduce the need for reliance on the reported health history of biological parents and relatives (Brown and Botstein, 1999; Graves, 1999
). And lastly, concerns about the discovery of non-paternity (and now non-maternity) through genetic testing are not uniquegenetic counsellors for years have confronted paternity issues outside of the context of gamete donation.
In some relationships, there may be virtually no concern over sharing the information with offspring at the appropriate time. In a Swedish study, 11% of couples elected to do so (Gottlieb et al., 2000). For the majority, however, this is not the case. In some situations in which the information is not shared, third parties may be aware of the method by which the pregnancy was produced and there is the danger, of course, that this information would be shared either purposefully or inadvertently with the child. Such late disclosure might cause substantial emotional distress. The same emotional distress however might result when the couple is obliged to share the information with the child.
It is virtually impossible to predict a child's response to this information. Given this lack of predictability, especially when the couple is uncomfortable in disclosing, the risk would far outweigh the advantages. Admittedly, secrets cannot be completely suppressed and may always be present in the minds of the couple as emphasized by McWhinnie (McWhinnie, 1984) and Triseliotis (Triseliotis, 1993
). These are theoretical considerations that are very difficult to quantify. In the study of DI families by Golombok et al. (1995), no ill effects on child development or on family relationships were evident when children were aged 48 years (Golombok et al., 1995
). As we have had but limited experience in the evaluation of families in which the information has been shared, it is impossible to catalogue responses and suggest policies. Given these uncertainties and current lack of data, it would not appear justified to demand that this information be shared as a condition of treatment.
Why should we, and society at large, impose upon infertile couples an obligation to reveal things that fertile couples need not? Do their rights to privacy and liberty differ? Do children resulting from adulterous relationships differ in their right to know their origin? Are we really doing a service to the child and to society by intruding and disturbing the private life and the private choice of a family?
Relationships vary greatly with background, ethnic origin, and attitudes of both the male and female partner. It would not be unreasonable for a health care provider to raise the issue of informing offspring of his/her genetic background at the time the use of donor gametes is considered by a couple. But to do more than to raise the issue and present known data on the potential psychological ramifications of disclosure and nondisclosure would violate the privacy of the couple's relationship and run contrary to the tenets underlying informed consent in medical practice. In the context of the humane practice of medicine, disclosure cannot be mandated as it would represent an infringement on the intrinsic rights of the couple in a situation for which there is no firm evidence of irreparable harm arising from nondisclosure.
Perhaps one of the most serious `risks' in making disclosure of donor gametes mandatory is the complete elimination of the problem. In fact, the resulting unavailability of donors or unwillingness to reveal by the couples, could lead to a marked reduction in the frequency of these reproductive interventions. As a result, that same child whom we are now trying to protect could, in reality, not exist at all!
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Notes |
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References |
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