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Qualitative and Quantitative Sociological Research on Stakeholder Attitudes

In Furrer et al, JAMA Network Open (2024), we  surveyed more than 1,400 participants representing the wider U.S. population in age, gender, and race/ethnicity. Nearly three-quarters of respondents said they support using polygenic embryo screening (PES) to assess the risk of a future child developing a physical or psychiatric condition, such as heart disease, diabetes, or depress but that number dropped considerably when people were first presented  with various concerns for both individuals and society. Far fewer respondents approved the use of the technology to predict traits unrelated to disease, such as intelligence, height, and skin color. The results suggest that educating people about the current shortfalls and implications of PES — including regulating the promises that companies can make — will temper optimism and help ensure that as these technologies develop, they will be implemented in scientifically sound, ethical, and equitable ways.

In Barlevy et al, Journal of Assisted Reproduction (2024), we performed qualitative thematic analysis of semi-structured interviews of two groups of key stakeholders for polygenic embryo screening (PES): reproductive endocrinology and infertility specialists (REIs), and in vitro fertilization (IVF) patients. Strikingly, most clinicians were either unwilling to discuss or offer PES to patients or were willing to do so only under certain circumstances, while many patients expressed interest in PES. While clinicians and patients often held favorable views of screening embryos for physical or psychiatric conditions, clinicians tended to temper their positive attitudes with specific caveats. Clinicians also expressed negative views about screening embryos for traits more frequently than patients, who generally held more positive views. Specific considerations raised by clinicians and patients may help guide professional societies in developing guidelines to navigate the uncertain terrain of PES.

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At the launch of our project in May 2021, we held a roundtable to bring together clinicians in reproductive endocrinology (REIs) and clinical geneticists with research scientists, lawyers, and ethicists to share views on PES across disciplinary boundaries. In Pereira et al, Human Reproduction (2022), we describe four clinically relevant issues identified by our multidisciplinary group: (i) the potential expansion of assisted reproductive technology (ART) services to a new pool of reproductively healthy individuals; (ii) patient requests for PES despite clinicians’ skepticism of whether there is sufficient evidence to support its clinical use; (iii) predicted disagreements between REIs and intended parents about how to specifically apply PES; and (iv) changes in REIs’ practices (e.g., the role of genetic counseling) that may be necessitated by widespread adoption of PES.

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