Funding Source: The Greenwald Foundation

Principal Investigator:
Robert L. Klitzman, M.D.

 

Project Overview
(from abstract):

This study examines physicians' and patients' views and approaches toward the complex ethical issues posed by Pre-implantation Genetic Diagnosis (PGD), and the effects of these on clinical care. PGD can help lower the number of children born with birth defects and disabilities, but also raises fears of "designer babies" and eugenics. Hence, PGD may be under-utilized and/or inappropriately over-utilized.Consequently, a series of critical ethical and policy questions emerge that have received little attention regarding when and for whom PGD is, and should be, used; and how providers and patients understand and communicate about it, and how they weigh the associated risks and benefits. These questions have vital implications for assessing whether professional and patient educational programs and additional professional guidelines and policies might be beneficial, and if so how.

 

The specific aims o f this study are: 1) to understand how PGD providers, other physicians, and patients confront the ethical and clinical issues posed by PGD; specifically, how they view the ethical issues and challenges that arise, and what range of approaches they take toward these issues. 2) to understand how their views and approaches toward these ethical issues are related to the clinical care decisions they make, and what factors shape their views and decisions. 3) to explore the implications for the development of guidelines and policy, future scholarship and research, and educational programs in this area.

 

In order to understand how to develop appropriate educational materials and interventions in this area, it is vital to understand first how these issues are now in fact handled. Therefore, to address these vital issues, we plan to interview 80 individuals: 20 in each of 4 groups: 1) doctors at IVF clinics/PGD laboratories, 2) other physicians (e.g., obstetricians, pediatricians, and geneticists not primarily involved with an IVF clinic), 3) patients who have undergone PGD (1 member of each couple), and 4) patients at risk for transmitting a genetic condition to a child who have considered, but decided against using PGD.  The study will assess, using qualitative methods, and analyze these data to explore needs for education, and guidelines, and additional research.