Genomics Law Report: Reproductive Genetic Screening: More Questions Than Anwsers" 12/16/09

This is an excellent and thought provoking commentary on Genomics Law Report regarding reproductive genetic screening and the ethics of 'donor' anonymity.

"Genomics Law Report: News and analysis from the intersection of genomics, personalized medicine and the law"

"Reproductive Genetic Screening: More Questions Than Answers"
Posted by Lawrence Moore on December 16, 2009

Read in full here:
http://www.genomicslawreport.com/index.php/2009/12/16/reproductive-genet...

Excerpt of interest on: Donor Anonymity

"Returning to the Maron et al. study, it is odd that Syerson as well as Daar and Bryzski read that study as calling for a national searchable database to pass along information about any genetic disorders that may arise. The study contained no such recommendation, but simply noted that the case “underscores the need for guidelines to notify gamete donors, recipients, and other affected parties once genetic disease arises.” However, a database is certainly one way to accomplish that notification and both voluntary and mandatory databases have been suggested by others. Syerson expresses concern that in a database “[w]ithout adequate privacy protections, recipients of a donor’s sperm may be able to contact the donor despite his desire to stay anonymous.” But as the GLR has noted before, when dealing with genomic data, even robust efforts to ensure anonymity may be illusory. Since a donor’s son has a copy of his Y chromosome, the child may have the relevant genomic data necessary to identify the donor father—as one donor’s 15-year old son demonstrated by sending a cheek swab to Family Tree DNA, finding two matches for his Y chromosome with the same last name, and then using the name and the limited information his mother had from the sperm bank to locate his father.

Even if donor anonymity is feasible, is it ethical? Proponents of anonymity are concerned about the effect ending donor anonymity may have on the supply of gametes. Daar, for example, has elsewhere written that “a non-anonymous donor policy in the U.S. would reduce the availability of donor sperm for unmarried women.” In other circumstances, there is a strong presumption that the father should remain responsible for his children. The policy against leaving a mother to support her child alone is so strong under U.S. law, in fact, that even young male victims of statutory rape must pay child support. Courts have “uniformly concluded that the fact that a child results from the criminal sexual act of an adult female with a minor male does not absolve the minor from the responsibility to pay child support.”2 Similarly, a husband is presumed by law to be the father of his wife’s children, and the courts in most states will require a man to continue to provide support for those children even when subsequent genetic testing reveals that his wife had cheated on him and the children are not his. Should children of donors be denied the financial support of a father that is compelled on behalf of other children?

Daar is of the view that “[o]n balance, children of single … parents fare as well as children raised in marital … homes.” Her argument implies that, just as there is a duty to screen for genetic problems, it is appropriate to consider the environment in which the donor child is to be raised. However, even an article by authors sympathetic to single parenthood notes that “[m]uch of the literature on single-parent families has focused on the negative consequences for children.” For example, “even in Sweden with its generous welfare state, a major 2003 study found that children raised in single-parent homes were at significantly higher risk for addictions and serious psychiatric problems.” Does the weight to be given the effect of anonymity on the supply of donors depend on the effect single-parent homes have on children?

And even if there is a sufficient number of donors, does an extreme case such as “Octomom” Nadya Suleman, the indigent single mother with 14 donor-conceived children, suggest that limiting access to certain reproductive technologies based on the ability to support the children might in fact be desirable? Not at all, according to several academic commentators. At least one author has taken the contrary position that “[t]he state has a compelling interest to act in the best interest of the offspring that result from infertility treatment”—including an interest in “the ability of the potential parents to provide for the children.” What about limitations based on the age of the recipient mother? A 66-year old woman who lied about her age to a California fertility doctor gave birth to two boys—and died when they were two. The American Society for Reproductive Medicine voluntary protocols include no upper age limit, but do suggest medical evaluation of potential recipients over 45. More generally, Daar argues that “imposing reproductive regimes that deny procreative rights to certain members of a society is dangerously reminiscent of our eugenics past.” Ironically, as we saw above, Daar favors screening gamete donors for genetic defects, which could be considered the actual practice of eugenics. (Of course, such screening would not prevent the rejected donor from fathering children on his own.)

Anonymity itself comes with a cost. One need only spend a little time on the website created by a donor child searching for her father and half-siblings to understand the pain some of these children feel at be deprived of the knowledge of their biological father’s identity. As the daughter of an anonymous donor put it on another such website, “[m]y mother’s need to have a genetic link to her child was valued, while my need to know, love and understand the father with whom I have a genetic link was not.” More than 25,000 such children, their parents, and donors, have registered at the Donor Sibling Registry, trying to connect donor children with half-siblings and fathers—up from fewer than 10,000 two years ago.

Article Seven of the 1989 United Nations Convention on the Rights of the Child (pdf) explicitly protects a child’s “right to know … his or her parents.” Several signatory countries, including Holland, Norway, and Sweden have outlawed anonymous sperm donation out of concern for the effect on the children. In 2002, a British court found that a child does have the “right to obtain information about a biological parent [a sperm donor] who will inevitably have contributed to the identity of his child.”3 In 2005, the UK abolished anonymity for donors, and gave donor children the right to access their “biological pasts” at the age of 18.

Things are different in America. The United States is one of only two countries (along with Somalia) that has not ratified the Convention on the Rights of the Child, and no state bans anonymous donation. A California court has held that a donor child with a genetic disorder has the right to her father’s medical information, any promise of anonymity made by the sperm bank notwithstanding. However, cases involving adoption suggest U.S. courts will not follow the British precedent and provide children with a right to learn the father’s identity. U.S. donor children appear to be left to self-help—including resources such as FamilyTreeDNA.com—if they wish to discover their biological fathers."