The gurgling infant girl awaiting adoption seems healthy now.
But what surprises may be encoded in her DNA? Are there flawed genes that predispose her to serious mental or physical health problems — perhaps soon, perhaps years from now — that would not only cloud her life, but put a severe burden on her adoptive parents?
DNA testing is growing in power to predict future health or disease, and with the Human Genome Project rushing toward its end, all sorts of genetic forecasting will increase.
In fact, the speed with which science is gaining the ability to predict who will fall victim to debilitating diseases is outpacing our power to cure or even treat those same ailments.
The dilemmas posed by such issues as who should be tested, who should be told, and who should be protected from involuntarily submitting or releasing information about their genetic makeup are among the thorny ethical issues discussed among the thousands of biotechnology leaders who convened recently in Boston for the Bio2000 convention.
Although genetic testing for predisposed medical conditions could invade every facet of human life, adoption specialists say it is already a rising concern among prospective adoptees.
“We’ve had a number of calls asking for just this kind of thing,” said Karen Eanet, a genetic counselor at Greater Baltimore Medical Center. “They ask for some things we can’t do and things we can do but wouldn’t recommend.”
The issue of predictive genetic testing of adoptees raises difficult moral questions. In whose interest would it be to know about medical problems ahead of time? What if the test detects conditions that aren’t treatable? Does testing invade the child’s right to privacy?
Courts have ruled that adoption agencies have to provide all reasonable medical history information. That hasn’t been legally interpreted to mean that agencies have to search for more information, such as a genetic test might provide.
But with hundreds of tests that can diagnose rare conditions and others on the horizon that could identify predispositions to more common diseases far in advance of symptoms, there could be incentives for couples to ask for genetic testing of a child before they adopt.
The dilemma pits the interests of some parents, those who are worried about hidden health problems, against the interests of children for whom agencies are seeking families. And, said specialists at an unusual meeting on adoption and genetic testing earlier this month, it raises the question of whether genetic technology has created a demand for “the perfect baby” or “the perfect family,” so that children with some abnormalities would be less likely to find homes.
“If we do these tests, it sounds like we’ll have a huge pool of unadopted children rotting in the foster care system,” said Susan Harris, a regional manager at Children’s Services of Roxbury.
“Genetic testing has the possibility of putting some children in the back of the line, and that really frightens me,” said Susan Soon-Keum Cox, an authority on international adoption who was adopted from Korea in 1956.
Harris and Cox participated in a meeting in March at the University of Massachusetts in Boston that brought together specialists from many fields to discuss genetic testing.
“My understanding is that right now there aren’t a lot of requests for this type of testing, but as the tests multiply and become more accurate, this problem will get more acute,” said Aytan Y. Bellin, counsel for a New York State task force weighing this and other bioethical issues.
Janet Farrell Smith, the conference’s organizer and a professor of philosophy at UMass, said one incentive for genetic testing is a lack of medical records in many cases, particularly in foreign adoption. In such cases, both the child and the adoptive parents could have an interest in genetic testing that would reveal a proneness to health problems that runs in the birth family.
A major question about preadoption gene testing, Smith said, is: “Will you violate the child’s privacy rights and risk genetic discrimination in the future?”
The conference brought together specialists from such disparate fields as medical ethics, adoption services, law and medicine.
Some argued that the main purpose of adoption is to find homes for children and that genetic testing could harm their chances.
Bellin referred to two cases in which couples considering adoption sought genetic testing to reveal whether an adoptee would develop Huntington’s disease, a fatal, inherited disorder. In both cases, specialists refused to perform the test.
Genetic tests already can detect rare but serious disorders in infants and can find single malfunctioning genes that cause diseases such as Duchenne muscular dystrophy and cystic fibrosis.
More problematically, DNA tests also can reveal the presence of genes that increase a person’s chance of developing heart disease, Alzheimer’s disease and inherited cancers. But these tests can’t predict with certainty, because environmental factors also help determine whether the disease develops.
Leonard Glantz, a lawyer and bioethicist at the Boston University School of Public Health, argued that testing for adult-onset diseases would violate the child’s right to privacy. And, even though it might benefit anxious parents who are worried about an adopted child’s future health risks, “My position is you don’t treat parent anxiety by testing their children for adult-onset diseases,” he said.
Dr. Laurie Demmer, a medical geneticist at UMass Memorial Health Care in Worcester, said she often consults with parents considering adoption and wanting to know whether the child might develop a life-threatening disease such as cystic fibrosis or might have a chromosome defect that could cause mental retardation.
At other times, the child may have some abnormalities, such as a cleft lip, that could be part of a genetic syndrome. That’s where a genetic test might add information that will help immediately in treating the child.
But, she said, she also has requests for tests she won’t do. “I spend a lot of time explaining why we don’t test children for late-onset disorders” such as Huntington’s disease or to detect genes they may carry that are harmless to them but could be passed on to a child. “We like to wait until they’re old enough to make the decision themselves,” Demmer said.
Perhaps the most vexing dilemma the participants discussed was whether prospective adoptees should be tested for a disease such as Duchenne muscular dystrophy. This fatal genetic disorder often isn’t diagnosed until the child is several years old and begins to show muscle weakness. Patients become progressively disabled and die in their teens or early 20s.
In this case, genetic testing of an infant wouldn’t lead to any medical benefit for the child, because there is no treatment. But parents may well feel that they’re not equipped to deal, financially or emotionally, with such a devastating condition.
Elizabeth Bartholet, a professor at Harvard Law School and an author on adoption and reproductive issues, said she feels that prospective adoptive parents “have some right to know about extreme problems they don’t feel ready to take on.” Others, however, argued against any attempt to match children’s needs with parents’ desires or ability to take care of them. Nobody, they argued, is prepared for a child with severe medical problems.
The conference was not aimed at creating a position on testing. But speakers noted that the American Society of Human Genetics and the American College of Human Genetics have taken positions against testing except to detect conditions for which treatment would have immediate benefits.
It remains to be seen how the issue will play out. Anita Allen, a professor of law and philosophy at the University of Pennsylvania, said, “I think the public adoption sector is extremely reluctant to move in the direction of genetic testing.”
But in private adoptions, said Allen, “`agencies have to depend more on the values of consumers.”
“I think there may be more pressures” to perform testing and more ambiguity about the decisions, she said.
