As more research is done on the human genome and more people seek genetic testing, researchers, physicians, genetic counselors and ethicists are struggling with the issues of how to present the new information to patients and whether certain findings should be presented at all.In other words, if a woman might have done something wrong: DO NOT DISCLOSE THE INFORMATION TO ANYONE! If a man might have done something wrong: DISCLOSE THE INFORMATION TO THE LEGAL AUTHORITIES AND COMMENCE A CRIMINAL INVESTIGATION!
A paper published Monday in the leading journal Pediatrics tackles a controversial discovery that can come out of genetic testing: when a child’s biological parent turns out to be someone else.
Whether that occurs through a switch at the hospital, a swap of embryos or sexual infidelity, genetic testing can bring such previously unknown facts to light. No matter the cause, it presents an ethical dilemma for medical professionals and one likely to become more common as genetic testing more more widespread. It has triggered a fierce and complex debate about whether parents — or those who might find out they are not true parents — have a right to know such information.
In the Pediatrics paper, ethicists at the University of Pennsylvania argue in favor of letting the parents of patients know that these facts can generally be found in the course of a test but will not be revealed to them.
“Because there isn’t a national consensus,” said co-author Autumn Fiester, director of education in the Department of Medical Ethics and Health Policy at the University of Pennsylvania, “getting a proactive policy that could prevent the harms that are taking place seemed like an imperative to address.”
Without such a policy, Fiester said, after the tests are run, parents might be confronted with being told that there’s something they may need to know about their parentage.
“Dangle something like that in front of any human being, and they’re going to be coerced to have that information, even if they will rue the day when they said yes,” she said.
Current guidelines from the American Academy of Pediatrics and the American College of Medical Genetics and Genomics (ACMG) advise speaking to patients about the issue of incidental findings but do not recommend disclosure or nondisclosure.....
While nondisclosure may be a good idea for avoiding family problems, there need to be some exceptions, said Arthur Caplan, a professor of bioethics at NYU Langone Medical Center and formerly of the University of Pennsylvania. For example, lab technicians may see DNA that leads them to suspect rape or incest. This type of finding might need to be reported because of the possibility of sexual abuse.
Now, what was that about "equality under the law" again?