How Should “CRISPRed” Babies Be Monitored Over Their Life Course to Promote Health Equity?

Abstract

Gene-edited babies who might be born in the future should be monitored over the course of their life. These patients' physical, mental, and social health monitoring should be coordinated by clinicians in ways that anonymize patients' data for privacy protection but also allow for national and international aggregate evaluations. Transnational monitoring efforts should focus on safety and efficacy, social and disability justice, what constitutes the standard of care, and how best to promote both access to care and social and genomic research and innovation. In addition, effective and binding mechanisms for stopping or limiting uses of gene editing technology should be developed.

Healthcare for Germline Genetically Modified People

“…Such an endeavor will create important administrative challenges because this could require a mandatory inclusion of genetically edited patients in a centralized database. Thus, our society will need to consider a balance between beneficence and public health and patient privacy, as well as sufficient resource allocation prior to implementing such a database (Kaser and Franasiak 2018;Thompson 2019;Adashi and Cohen 2020).…”

“…Similarly, Thompson (2019) explores a theoretical case where four couples, who are carriers of severe monogenic conditions, genetically edited their babies. Through this case, the author assessed how germline genetically edited children should be monitored over the course of their life.…”

“…Through this case, the author assessed how germline genetically edited children should be monitored over the course of their life. Thompson (2019) suggests that healthcare providers need to mitigate physical effects of the modification through routine medical care, with particular attention on possible residual effects of the original disease and any effects, intended or unintended, that might be linked to the edit. Additionally, the mental health of the edited child should be closely monitored.…”

The rise of non-traditional pregnancies through assisted reproductive technologies

“…Midwives should be prepared to explain/reiterate this to parents who may use such ARTs to conceive their child(ren), particularly if more people choose to use them. Another prospect of hGGE is that any person born following the use of the technology, at least initially, may require additional tests and ongoing health reviews to ensure that no adverse side-effects have been encountered (Thompson 2019).…”

Initial heritable genome editing: mapping a responsible pathway from basic research to the clinic

“…In one mitochondrial replacement study, ‘whole blood and tissue samples, including buccal swabs, skin tissues, hair follicles and urine precipitates, were provided for testing’ (Ishi 2019 , p. 324). Furthermore, monitoring may be extended to mental health and social issues (Thompson 2019 ).…”