NICHD STRIVE for Change

Clear distinction needed between Eugenics Vs. Health Related Research

Description :

Many people with neurodevelopmental conditions face an increased risk of physical health disparities.  However, much of the research on neurodevelopmental conditions is focused on the cause, cure, prevention, and treatment of neurodevelopmental conditions instead of on the co-occurring health conditions.  Many people within some populations with neurodevelopmental conditions (e.g., Autism, Down syndrome, etc) consider this research to be eugenics.  The heavy emphasis on eugenics-related research creates mistrust in research with many adults from these populations.  For example, many intellectually-able adults may not participate in genetics research, that could lead to better outcomes with co-occurring health conditions, because they do not want to contribute their genetic data to research with eugenics aims.  Additionally, much research, including genetics research, under-emphasize their eugenics aims in within the informed consent- which is unethical and increases mistrust within these communities.  We need to create very clear DISTINCTIONS between health-related and eugenics-related research for people with neurodevelopmental conditions.

1. What obstacles impede advancing health disparities research for NICHD populations?

Many people with neurodevelopmental conditions face an increased risk of physical health disparities. However, much of the research on neurodevelopmental conditions is focused on the cause, cure, prevention, and treatment of neurodevelopmental conditions instead of on the co-occurring health conditions. Many people within some populations with neurodevelopmental conditions (e.g., Autism, Down syndrome, etc) consider this research to be eugenics. The heavy emphasis on eugenics-related research creates mistrust in research with many adults from these populations. For example, many intellectually-able adults may not participate in genetics research, that could lead to better outcomes with co-occurring health conditions, because they do not want to contribute their genetic data to research with eugenics aims. Additionally, much research, including genetics research, under-emphasize their eugenics aims in within the informed consent- which is unethical and increases mistrust within these communities. We need to create very clear DISTINCTIONS between health-related and eugenics-related research for people with neurodevelopmental conditions.

2.What innovative or novel approaches to research could be leveraged to mitigate health disparities in NICHD populations?

Many people with neurodevelopmental conditions face an increased risk of physical health disparities. However, much of the research on neurodevelopmental conditions is focused on the cause, cure, prevention, and treatment of neurodevelopmental conditions instead of on the co-occurring health conditions. Many people within some populations with neurodevelopmental conditions (e.g., Autism, Down syndrome, etc) consider this research to be eugenics. The heavy emphasis on eugenics-related research creates mistrust in research with many adults from these populations. For example, many intellectually-able adults may not participate in genetics research, that could lead to better outcomes with co-occurring health conditions, because they do not want to contribute their genetic data to research with eugenics aims. Additionally, much research, including genetics research, under-emphasize their eugenics aims in within the informed consent- which is unethical and increases mistrust within these communities. We need to create very clear DISTINCTIONS between health-related and eugenics-related research for people with neurodevelopmental conditions.

3. What are the best opportunities to broaden community engagement in the research process?

To better understand the needs of neurodevelopmental people related to health disparities research that is not related to eugenics (cause, cure, prevention, treatment of neurological condition) in these populations, we need more research (and prioritized RESEARCH FUNDING) with adults from these populations, including intellectually-able adults (currently not a prioritized group in NICHD).  NICHD needs to encourage and fund research based in the neurodiversity paradigm.

4. What are some examples of community engagement models to strengthen health disparities research efforts (such as models for partnerships, collaboration)?

There are numerous community based research models that can address this issue.  The main issue is that the NIH has not yet been willing to address the distinction between eugenics and health-related research for neurodevelopmental populations and the NIH has not provided any funding priorities across NIH institutes for physical health-related research related to co-occurring conditions in intellectually-able adults with neurodevelopmental conditions - with the one exception of Down syndrome and the INCLUDE initiative.

5. What resources (e.g., tools, technology, human capital) are needed to advance the field of health disparities research for NICHD populations?

We need MORE people with neurodevelopmental conditions encouraged and prioritized as researchers (not just community-based research partners).  They need to be actively recruited, the way we actively seek women and minorities for STEM research.  But we need researchers with neurodevelopmental conditions to be directly involved with the research and RESEARCH ETHICS of eugenics versus physical health related research at all levels of the research process.  Eugenics related research needs to be discussed intensely at NICHD even more because of NICHD's emphasis on children and adolescents from neurodevelopmental populations who are not as equipped to address the ethical implications of eugenics research- similar to children from the LGBTIQA+ communities historically.  Thus, NICHD needs to not only conduct research with intellectually-able people with neurodevelopmental conditions, it needs to include them at EVERY LEVEL of the research process.

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Idea No. 197