Ableism and Modern Eugenics in Heritable Human Genome Editing
Ethical Legal Social Issues (ELSI) Public Health and Policy
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Introduction:
On June 5, 2024, the National Council on Disability (NCD) released the most recent publication in their Bioethics and Disability report series, "From Fetal Surgery to Gene Editing: The Current and Potential Impact of Prenatal Interventions on People with Disabilities." The report authored as an Applied Practice Experience by Dr. Stephanie Meredith includes an analysis of the ethical implications of heritable human genome editing and policy recommendations to prevent harming people with disabilities as a historically marginalized population targeted by eugenics. Notably, disability advocates were concerned that leaders in the disability community were not sufficiently included as stakeholders at the International Summit on Human Gene Editing held by the National Academy of Sciences and the National Academy of Medicine and that the US had not taken more proactive policy measures to prevent the use of heritable human genome editing.
Methods:
The ethical analysis in the NCD report was guided by the following methods:
1. an assessment of heritable human genome editing technology using the 2019 Public Health Code of Ethics
2. a public comment session with 19 participants including advocates representing a range of disabilities (Deafness, achondroplasia, Down syndrome, Spina Bifida, congenital birth defects, etc.),bioethicists, policy experts, and Dr. Susan Klugman from ACMG;
3. a formal community conversation with disability advocates, bioethicists, public policy leaders, and medical and genomics experts (including Deepti Babu, MS, CGC, National Society of Genetic Counselors President (2023), Sandra Prucka, MS, LCGC, National Society of Genetic Counselors Board of Directors, Laura Hercher, MA, MS, CGC, Genetic Counselor and Professor, and Susan Klugman, MD, FACOG, FACMG, Obstetrician, Geneticist, and American College of Medical Genetics and Genomics President).
4. Key Informant Interviews with five interdisciplinary experts in the fields of genetics, disability advocacy, health equity, and public policy.
Results:
Marcy Darnovsky from the Center for Genetics in Society and Sylvia Yee from the Disability Right Defense Fund argued that "ableism is baked into heritable genome editing so fundamentally that it is impossible to extricate it" because it includes an assumption that life with a disability is a life of pain and suffering and something to be avoided--contrary to the quality of life assessments reported by people with disabilities (Skotko, 2011). Ultimately, the report identified the following ethical concerns regarding the consideration of heritable human genome editing to eradicate conditions without consulting with those who have lived experience: "(1) procedural justice by not allowing for the participation of affected parties, (2) respect for relational individual and community solidarity by seeking to eradicate segments of the population based on ableist perceptions of disability (Garland- Thomson and Sufian 2021), and (3) the autonomy [and consent] of children and future generations in making decisions about their genetic makeup (NCD, 2024)."
Conclusion:
The NCD report concludes that these ethical problems need to be addressed through a number of policy interventions such as the Congressional funding of public forums to discuss controversial fetal technologies, with the intentional inclusion of people with disabilities; incentivizing and funding the development of educational unit about the civil rights history of people with disabilities and eugenics; and Health and Human Services encouraging the attendance of people with disabilities at science and biomedical conferences considering these genetic engineering technologies.
On June 5, 2024, the National Council on Disability (NCD) released the most recent publication in their Bioethics and Disability report series, "From Fetal Surgery to Gene Editing: The Current and Potential Impact of Prenatal Interventions on People with Disabilities." The report authored as an Applied Practice Experience by Dr. Stephanie Meredith includes an analysis of the ethical implications of heritable human genome editing and policy recommendations to prevent harming people with disabilities as a historically marginalized population targeted by eugenics. Notably, disability advocates were concerned that leaders in the disability community were not sufficiently included as stakeholders at the International Summit on Human Gene Editing held by the National Academy of Sciences and the National Academy of Medicine and that the US had not taken more proactive policy measures to prevent the use of heritable human genome editing.
Methods:
The ethical analysis in the NCD report was guided by the following methods:
1. an assessment of heritable human genome editing technology using the 2019 Public Health Code of Ethics
2. a public comment session with 19 participants including advocates representing a range of disabilities (Deafness, achondroplasia, Down syndrome, Spina Bifida, congenital birth defects, etc.),bioethicists, policy experts, and Dr. Susan Klugman from ACMG;
3. a formal community conversation with disability advocates, bioethicists, public policy leaders, and medical and genomics experts (including Deepti Babu, MS, CGC, National Society of Genetic Counselors President (2023), Sandra Prucka, MS, LCGC, National Society of Genetic Counselors Board of Directors, Laura Hercher, MA, MS, CGC, Genetic Counselor and Professor, and Susan Klugman, MD, FACOG, FACMG, Obstetrician, Geneticist, and American College of Medical Genetics and Genomics President).
4. Key Informant Interviews with five interdisciplinary experts in the fields of genetics, disability advocacy, health equity, and public policy.
Results:
Marcy Darnovsky from the Center for Genetics in Society and Sylvia Yee from the Disability Right Defense Fund argued that "ableism is baked into heritable genome editing so fundamentally that it is impossible to extricate it" because it includes an assumption that life with a disability is a life of pain and suffering and something to be avoided--contrary to the quality of life assessments reported by people with disabilities (Skotko, 2011). Ultimately, the report identified the following ethical concerns regarding the consideration of heritable human genome editing to eradicate conditions without consulting with those who have lived experience: "(1) procedural justice by not allowing for the participation of affected parties, (2) respect for relational individual and community solidarity by seeking to eradicate segments of the population based on ableist perceptions of disability (Garland- Thomson and Sufian 2021), and (3) the autonomy [and consent] of children and future generations in making decisions about their genetic makeup (NCD, 2024)."
Conclusion:
The NCD report concludes that these ethical problems need to be addressed through a number of policy interventions such as the Congressional funding of public forums to discuss controversial fetal technologies, with the intentional inclusion of people with disabilities; incentivizing and funding the development of educational unit about the civil rights history of people with disabilities and eugenics; and Health and Human Services encouraging the attendance of people with disabilities at science and biomedical conferences considering these genetic engineering technologies.