The Human Genome Project: considerations for people with intellectual disabilities.
Use a human-rights checklist before you support any genetic test or treatment for clients with ID.
01Research in Context
What this study did
The authors wrote a position paper, not an experiment. They looked at fast-moving gene science and asked, "What does this mean for our clients with intellectual disabilities?"
They mapped every step of genome work—testing, editing, picking embryos—onto human-rights rules. Their goal was to give BCBAs a checklist before signing off on any genetic plan.
What they found
No data tables, just a warning. Gene tests can label people as "defective," shrink their choices, and open the door to forced treatment.
The paper says the fix is to run every genetic decision through a human-rights screen: respect, freedom, and full consent, even when the client can’t speak.
How this fits with other research
Iqbal (2002) showed the same clash in one adult. Staff stopped a DRI plan because they felt guilty about surrogate consent; the client’s ritual came back. LeBlanc et al. (2003) widens that single-case worry to the entire genome era.
Peters et al. (2013) takes the idea overseas. They say ASD research in poor countries needs the same rights lens, plus local culture tweaks. It extends the 2003 paper from ID to autism and from rich labs to low-income towns.
Hobson (1987) and Malagodi (1986) beat the same drum earlier: behavior analysts must tackle big social problems, not just clinic data. LeBlanc et al. (2003) answers them with a concrete tool—the human-rights checklist—for the newest big problem: gene science.
Why it matters
You may soon sit in an IEP or medical meeting where a doctor pushes genetic testing or a new drug tied to DNA. Pull out the rights checklist: Does the client understand? Is saying "no" truly allowed? Document the answers. One extra form can stop coercion and keep your client’s choices alive.
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02At a glance
03Original abstract
The paper discusses the impact which recent advances in gene technology may have for people with intellectual disabilities. It highlights a conflict between the apparent benefits of advances in genetics for the population in general and the negative effects on persons with intellectual disabilities in particular. This conflict is illustrated in the paper through the use of examples, including the implications of a person's lack of capacity to consent to investigations and treatment; the issue of individual responsibility for antisocial behaviour when this is considered to have a genetic component; and the issue of life and death decisions about treatment in the face of a progressive, genetically determined, disorder. The authors adopt a human rights perspective to discuss these examples because it provides a richness to articulate and justify moral concerns in this area which is lacking in much of the current debate as this is dominated by the primacy of autonomy.
Journal of intellectual disability research : JIDR, 2003 · doi:10.1046/j.1365-2788.2003.00530.x