Right to privacy key concern with anonymous gamete donation

Some argue children should have access to information

The vast majority of gamete donations are made anonymously, but a growing number of countries are enacting laws allowing children access to identifying information about their gamete donor.

"Several ethical values are at stake," says Inmaculada de Melo-Martín, PhD, professor in the Division of Medical Ethics at Weill Cornell Medical College in New York, NY. These include the right of privacy of the donor, parental autonomy and privacy of the parents, and the interest of donor-conceived children in knowing their genetic origins.

"Depending on the importance that is given to these different ethical values, one might be more or less inclined to approve of anonymous donations, policies, and practices," says de Melo-Martín. Here are several ethical justifications for the permissibility of anonymous gamete donations:

• That donors should be able to choose whether or not to share personal information.

"The argument is that donors should be able to protect themselves against unwanted intrusions," says Leslie P. Francis, JD, PhD, distinguished Alfred C. Emery professor of law and distinguished professor of philosophy at University of Utah in Salt Lake City. For example, a donor at age 22 might not want to be contacted 20 years later, when he or she has moved on in life and established a family.

"Allowing donors to remain anonymous protects them from becoming involved at all stages," should there be any problems with the pregnancy or the child develop a disease at any age, says Rebecca A. Marmor, MD, a resident in the Department of Surgery at University of California San Diego.

"It protects the donor as the genetic offspring grow up from having to participate in the rearing of the child, either emotionally or financially," adds Marmor.

• That the possibility of anonymity must be present to encourage a ready supply of donors.

A 2014 study from Denmark found that if given the choice of remaining anonymous, or becoming known to their genetic offspring, 70% of sperm donors wished to remain anonymous.1

"Importantly, among those who wished to remain anonymous, only 17% stated they would continue to donate if their anonymity could not be assured," says Marmor.

Allowing children access to information

The main justification usually given for allowing children access to identifying information on gamete donors, says de Melo-Martín, is that such information is needed for the formation of a healthy identity.

"Access to the identity of the genetic progenitors is thought to be necessary to help make sense of one’s physical characteristics, talents, or interests," she adds. "It can give context to questions about family resemblance."

Ethical justifications for allowing children access to identifying information include a belief that knowledge of their genetic makeup may serve to improve their health and lead to more stable family relationships and a stronger self-identity. "There is a paucity of evidence to support any of these claims," says Marmor.

In a 2014 Hastings Center Report, de Melo-Martín questions the ethical justifications that are often thought to ground a right to know one’s genetic origins.2 She argues that although some of the interests that such right is intended to protect — strong family relationships and health — can be recognized as weighty ones, there is no evidence that such interests are set back by anonymous gamete donations.

"Anonymous donations do not prevent parents from disclosing donor-conceived individuals’ mode of conception," adds de Melo-Martín. Similarly, anonymous donations allow donor-conceived people access to relevant health information.

"Furthermore, even the evidence that failing to disclose one’s mode of conception adversely affects these interests is, at best, ambiguous, and at worst, nonexistent," says de Melo-Martín.

Some argue that lacking access to identifying information can hinder the forging of healthy identities in donor-conceived children.

"The understanding of identity in this argument has been questioned — is identity tied to genetic origins, or social, or constructed in some other ways?" asks Francis. "Another question about this argument is whether the interest in identity formation is stronger than the donor’s interests in autonomy and privacy."

Another argument is that medical history information may be very important to the health of any children born from the donation. "Perhaps the most compelling reason that offspring ought to have access to identifying information about their donors is on the grounds that such information could be used to promote the health of the offspring," says Marmor.

However, says Francis, "it is, of course, possible to arrange for medical history updates about the donor to be shared with offspring without having the donor’s identity itself shared."

The age a child should be allowed access is another unresolved question. "Some argue that children under the age of majority should not receive information that they might not be able to handle psychologically," says Francis.

Childrens’ autonomy interests

Some argue that parents of minor children have rights regarding what information is shared with their children, and that their desire for donor anonymity must be respected. "When children become adults, however, their own autonomy interests arguably are what should be considered in revealing donor identity, not the interests of their parents," says Francis.

A study from Sweden, where legislation has mandated that children have access to identifying information about their donors since 1985, revealed that 89% of parents had not informed their children of their status.3

"Studies such as this illustrate that mandating the availability of identifying information for donor offspring is not a very effective way to increase the acceptance and understanding of this form of conception," says Marmor.

In fact, even when offspring are guaranteed some basic information about their gamete donors, most parents still do not reveal that their children were conceived from gamete donors.

"Not surprisingly, children born to lesbian and gay couples are often more informed about their status as donor offspring," says Marmor.

A recent study from Belgium examined the place of the gamete donor in children born to lesbian couples. In some families, the donor was viewed as an "instrument," necessary for the child’s conception, whereas other families offered a more personalized account of the donor.4

"This illustrates a fundamental point: A child’s knowledge and acceptance of his or her genetic origins is often modulated by the narrative developed by parents, should they choose to divulge the circumstances of his or her conception," says Marmor.

References

1. Bay B, Larsen PB, Kesmodel US, Ingerslev HJ. Danish sperm donors across three decades: Motivations and attitudes. Fertil Steril 2014;101:252–7.
2. Melo-Martín ID. The ethics of anonymous gamete donation: Is there a right to know one’s genetic origins? Hastings Cent Rep 2014;44(2):28-35.
3. Gottlieb C, Lalos O, Lindblad F. Disclosure of donor insemination to the child: The impact of Swedish legislation on couples’ attitudes. Human Reproduction 2000;15:2052–2056.
4. Wyverkens E, Provoost V, Ravelingien A, et al. Beyond sperm cells: A qualitative study on constructed meanings of the sperm donor in lesbian families. Human Reproduction 2014. [Epub ahead of print]

SOURCES

• Inmaculada de Melo-Martín, PhD, Professor, Division of Medical Ethics, Department of Public Health, Weill Cornell Medical College, Cornell University, New York, NY. Phone: (646) 962-8031. E-mail: imd2001@med.cornell.edu.
• Leslie P. Francis, JD, PhD, Distinguished Alfred C. Emery Professor of Law/Distinguished Professor of Philosophy, University of Utah, Salt Lake City. Phone: (801) 581-4289. E-mail: francisl@law.utah.edu.
• Rebecca Marmor, MD, Department of Surgery, University of California San Diego. E-mail: rmarmor@ucsd.edu.