Part of the group that authored the article “The Best Ethical Practices for Clinicians and Laboratories” on non-invasive prenatal testing (NIPT) are holding a survey to find out what you think about it. I completed it over the weekend and share it here because I think this is a real opportunity for closing a gap that has persisted in how prenatal testing is done.
Take the survey at this link.
The recent professional and academic statements on NIPT recognize that the high cost of the testing will not make it accessible to many expectant women. Therefore, they argue that justice (fairness) requires that NIPT be made affordable so that all expectant women have access to it, not just women of means. But, the administration of NIPT–and indeed all prenatal testing–has been controlled and dictated by elites.
Due to its scientific and medical nature, prenatal testing is first developed by the elites in the scientific and medical professions. Then, once its accuracy has been shown through research studies, the leaders of professional medical organizations–elites among elites–write recommendations on how prenatal testing should be offered and to whom.
And, yet, since the dawn of prenatal testing, the same gaps in information and understanding between what the elites recommend and how prenatal testing is actually administered has persisted.
You can go back and look at articles written in every decade since the 1970’s where commentators  note the development-of-the-day in prenatal testing: 1970’s, amniocentesis and abortion following Roe v. Wade; 1980’s, AFP testing and wrongful birth lawsuits; 1990’s, the discovery of the association between the nuchal fold and aneuploidies, and the discovery of cell free DNA in the mother’s blood stream; and the 2000’s, with the implementation of first trimester testing through nuchal fold ultrasound measurement and now the advent of NIPT since 2011.
The authors commenting on these developments will then  note the ethical issues associated with prenatal testing, highlighting that it should be offered to respect a woman’s right to know, but recognizing the difficulty in adequate counseling. And, then, the article will end by  noting that science is progressing beyond our readiness to ethically implement it, so the authors will call for all stakeholders to have a discussion about how this new technology should be administered.
But, the stakeholders that are never invited to the table are those who are actually living with the tested-for condition or even those who will be offered the testing.
The elites who write the recommendations and ethical commentary on Down syndrome prenatal testing do not seek the input of individuals with Down syndrome or their families, even while recognizing the risk of stigmatizing Down syndrome posed by prenatally testing for it.
Similarly, and perhaps surprisingly, elites of the medical organizations who write guidelines do not seek the input from their own patients about how prenatal testing should be administered. Instead, the guidelines are based on the scientific studies (often funded by the test manufacturers) to prove their statistical reliability, and then after the guidelines are published come the studies showing that expectant mothers do not understand the testing itself or the test results; that there are inadequate genetic counseling services in both number and quality; and, that the information needed to accompany a test result is not regularly provided to patients by their health care provider or by the testing laboratory.
The Stanford survey offers an opportunity to bridge this long-standing gap and I appreciate the members of the Stanford group reaching out to seek the input of many who are interested in the administration of prenatal testing.
The survey begins with a story about a woman who is pregnant considering prenatal testing and asks your initial opinions about the situation. Then, quotes are listed that represent the array of responses people have to the issues involving prenatal genetic testing and you are asked whether you agree or disagree with each position and why. Participation in the survey is anonymous, inviting honest responses from participants.
Readers of this blog are already interested in prenatal genetic testing, so this survey presents an opportunity for you to share your positions. Allow yourself some time to provide thoughtful answers, so that you do not rush through.
I hope you will take advantage of this opportunity and complete the survey. It is one of the few times when non-elites have a chance to have their voice heard about how prenatal genetic testing should be ethically administered.