The definition of health has long been contested. Naturalistic accounts of health focus on the absence of disease in addition to biologically natural and normal functioning. Normative accounts of health focus on the judgments about what people value and want to be able to do. Phenomenological accounts of health focus on the lived experience of one’s own body. In a study where we interviewed 27 reproductive endocrinology and infertility specialists (REIs) and 26 current or recent in vitro fertilization (IVF) patients on their perspectives toward polygenic embryo screening (PES) – a new type of preimplantation embryo screening that provides genetic estimates of polygenic conditions and traits (e.g., diabetes, cancer, depression, height, and intelligence) developing in the future –, many (i.e., 16 clinicians and 19 patients) discussed the importance of and desire for “healthy” embryos, babies, or children. When asked to explain what they meant by “healthy,” most of these clinicians and patients (i.e., 7 clinicians and 10 patients) framed the concept in naturalistic terms. In contrast, very few interviewees (i.e., 1 clinician and 1 patient) framed “healthy” in phenomenological ways. This finding not only contextualizes these stakeholder perspectives toward PES but also invites critical reflection: a) generally, on the goals of assisted reproduction and conceptions of health within such contexts, and b) specifically, on PES’s capability to assist (prospective) parents in their endeavors to have healthy children. Such reflection considers the tensions between the principle of procreative beneficence and an ethic of “openness to the unbidden.”
Authors: Dorit Barlevy, Baylor College of Medicine Center for Medical Ethics and Health Policy; Gabriel Lázaro-Muñoz, Harvard Medical School; Stacey Pereira, Baylor College of Medicine Center for Medical Ethics and Health Policy
