Alliance for Disability Justice and Ethics in Reproductive Genetics
In response to an expanding frontier of prenatal genetic technology that raises profound ethical questions and risks reinforcing ablism, Genetic Support Foundation and Lettercase have formed the Alliance for Disability Justice and Ethics in Reproductive Genetics.
Our aims are to collectively:
1) Identify and advance 1–3 shared policy priorities each year that promote disability justice and ethical practices in reproductive genetics.
2) Ensure these priorities are shaped by both cross-disciplinary expertise and the lived experiences of people with disabilities.
3) Collaborate on advocacy, public education, and policy efforts to amplify our collective voice.
Inaugural Meeting
This January, we held our first quarterly Alliance meeting! We were joined by approximately 50 scholars, advocates, clinicians, and community leaders, and are so grateful for each and every one of their voices and thoughtful perspectives.
Meeting Topics
During our inaugural meeting, we:
- Presented the purpose of the Alliance for Disability Justice and Ethics in Reproductive Genetics
- Reviewed the current landscape of reproductive genetics and causes for concern moving forward
- Compared proposed policy interventions aimed at addressing ethical challenges in prenatal technologies
- Discussed Alliance member priorities and brainstormed policy strategies
Meeting Discussion
Concerns discussed during the meeting include:
- False premises and faulty research underlying polygenic screening (e.g., selecting for a “high IQ” when IQ itself isn’t a valid measure, nor can it be predicted)
- Marketing that advertises “healthy” children and preys on vulnerable parents who want the best for their child
- Framing eugenics as a “thing of the past,” leading to greater freedom in how people are currently promoting eugenic ideas
- Effects of reinforcing genetic determinism and “superior” genetics on society
- Rapid commercialization of genetic technologies without regulation
- Lack of research funding and movement towards AI-driven research, resulting in validity issues and data quality limitations
Strategies discussed during the meeting include:
- Developing a shared vocabulary and language to frame our messaging
- Using grassroots advocacy to promote systemic change
- Bringing our message into the public and social media space and measuring over time how the general public feels about these issues
- Educating trainees – not just genetics providers but also midwives, nurses, birth workers, etc.
Resources
Resources shared during the meeting include:
- International Commission on the Clinical Use of Human Germline Genome Editing
- Autistic Self Advocacy Network (ASAN) Comments on the Clinical Use of Human Germline Genome Editing
- Center for Genetics and Society
- Research by Daphne Martschenko
- Genetic Support Foundation blog
- Genetic Support Foundation podcast, CODED: Genetics
- Tech Won’t Save Us podcast Pronatalism and Silicon Valley’s Right-Wing Turn with Julia Black
- List showing dozens of startups/labs working on IVG, polygenic screening, embryo editing, and artificial wombs
- ELSI Friday Forums
- Sign up for the Trisomy Roundtable hosted by Trisomy 13 and 18 Collaborative (first meeting February 4th)
Watch a recording of our inaugural meeting and download the presentation slides below:
