Whose genetic tests are they, anyway?

The following is the transcript of a youtube by Art Kaplan, renowned medical ethicist at the University of Pennsylvania. We are reprinting it here because it is a siren call, red flag, canary in the coal mine for questions of women’s (and men’s) medical autonomy in the 21st century. Are you entitled to your health information, or not?  

Hi. This is Art Caplan. I am at the Department of Medical Ethics and Health Policy at the University of Pennsylvania. I want to talk to you today about a provocative question: Can a doctor lie about the results of a genetic test if he or she thinks that they might lead to an abortion?

The State of Arizona is considering a law that might make it possible to make the answer to that question “yes.” They are passing a law that says they are not going to accept lawsuits for wrongful births. Wrongful birth lawsuits basically say that if a doctor doesn’t offer a test, doesn’t give the results of a test, or gives them inaccurately, the doctor still can’t be sued for making that kind of decision.

Nine states have these laws. Now, these laws are pretty difficult to enforce. Wrongful birth laws get us into the question of whether a child should have been born at all. Courts hate to wrestle with questions about whether somebody, even an infant, might be better off dead than alive. But I think the laws don’t make much sense.

Part of the problem with these laws is, it’s one thing for a doctor to make a mistake and not offer a test. It’s another thing to deliberately withhold the information that a test is there for a woman who is pregnant, a prenatal test, or to lie when they have the results. Even if the State of Arizona or other states pass laws against wrongful birth, I’m pretty sure that it is still malpractice.

But this issue gets even more important because new forms of prenatal testing are rapidly coming down the road, replacing amniocentesis and chorionic villus sampling which, as we all know, have their risks for fetuses and moms and have to be done relatively later in pregnancy. We are soon going to see tests that use blood (mom’s blood) and allow access to fetal DNA just circulating in the mother’s blood.

So, although 10% of pregnancies might have prenatal tests today, soon the question is going to be, should every pregnant woman receive a prenatal test? Given these laws about wrongful birth, the question then becomes, should every woman have a right to expect testing? Should every woman have a right to expect honest results no matter how they might act or choose to act based on those results?

I am going to say that at the end of the day, these tests do have to be offered routinely. We might not like the fact that they could lead to more abortions. We might not like the fact that some women and their spouses or partners might not understand the information or overworry about disability. That is a problem for counseling. It doesn’t justify not offering the tests, and not being honest about tests is just a recipe for disaster. Even if one, as a matter of conscience, is worried that an abortion might result, you still have to let the test results be known and let women make the decisions.

So, at the end of the day, I think Arizona’s efforts to limit or restrain the use of prenatal testing and test results aren’t going to hold up. They are not going to hold up to legal challenges. They don’t hold up to ethical analysis. Women do have the right to expect [to be told about] whatever testing might be out there, to be offered it, to choose to take it, and to hear the results pretty honestly.

If we don’t like how decisions are being made, then it’s up to the doctor to counsel, to educate, and to inform. Withholding a test is never the way to go.

We couldn’t agree more. Please stand up and let your voice be heard. Our daughters, our sons, and their daughters and sons need you to speak out. Loud and clear.

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Ellen and Rachel are two old friends and “expert” mamas—one a pediatrician and one a family therapist—with fifty years of parenting experience between them.

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