The Ethics of Autism: Among Them, but Not of Them

5 Research on Persons with Autism

ResearchonPersons withAutism Human subjects research raises significant questions. Is it ever permissible to use human beings as research subjects? If it is permissible, is it ever permissible to use human beings who are not competent decision makers as research subjects? The particulars of the answer to both questions—what makes human subjects research permissible at all, and what is the basis for appropriate proxy decisions—are the focus of this chapter. Research on autism can take two forms. Given the genetic basis of some cases of autism, some research on the causes of autism will necessarily include research into extended families, searching for possible genetic precursors (Chen et al. 2003). Research on autism, especially onthefamiliesofchildrenwithautism,hasahistorythatisparticularly fraught. At one time parents, and in particular the mothers of children with autism, were believed to cause the condition in their children. These claims were based on mistaken assumptions about cause and effect, the toll that having a child with autism take on family members, as well as sampling errors (Kotsopoulos 2000). Blaming parents for their child’s autism is a pernicious practice. Yet even today it persists, in the guise of misplaced admonitions that parents should not have vaccinated their child, should alter their child’s diet, or are not engaging in therapeutic play of sufficient quality or quantity.1 Researchers should be cognizant that many parents of children with autism are aware of this painful history; thus researchers should guard against the perception that research into the family history of autism can, or will, be used to impart blame. When researching genetic precursors of any disease, it is inevitable that some guilt may emerge on the part 180 • The Ethics of Autism of family members. But given the mistakes and abuses that surround autism, researchers should be particularly sensitive on this count. Family members may or may not have autism themselves, but they may carry genes that could contribute to autism. In some instances , the results of those genetic precursors may not be harmful to the person who carries them. For example, among fathers of people with autism who were particularly good at detail-oriented tasks, the fathers’ attention to detail “resembled individuals with autism, but, importantly, for these fathers their detail-focused cognitive style was anassetnotadeficit”(Happé2000,212).Familymemberswhodonot have autism and are competent decision makers are in a position to giveinformedconsenttoparticipateinresearch.Fornon-autonomous family members, such as young siblings of persons with autism, care must be taken that appropriate surrogate consent and other research protections are in place. Several types of harms can accrue to otherwise healthy family members who participate in research into autism’s genetic aspects. First, it is possible that a family member could be found to carry genes that put that individual at risk of having a child with autism, knowledge that may bring stress and anxiety. Potential parents, knowing that they carry genetic precursors to autism, may find that knowledge a substantial burden, forcing them to grapple with many of the issues considered in the previous chapter. Second, it is possible that this information could put individuals’ insurability in jeopardy. While some genetic precursors to autism may not be directly harmful, and may even be beneficial to individuals who posses them, the fact that their futurechildrenareatgreaterriskforautismmaydisqualifytheparents, or future children, from some insurance policies. As discussed in the beginning of chapter 4, the costs of raising a child with autism are substantial .Third,aproblemofdistributivejusticeemergeswhenfamilies of persons with autism are asked to be research subjects. Family members may be asked, time and again, to participate in studies designed to learn about autism, a burden that escapes families without autistic members. In addition to the above problems, family members may be taken advantage of due to the desperation they might experience by virtue of taking care of a person with autism, or the unrealistic hope Research on Persons with Autism • 181 that research participation will result in direct benefits to their autistic family member (Chen et al. 2003). These considerations should be weighed off against the fact that family members may find research participation gratifying, in light of the paucity of options available to help their autistic family member. Thesecondformofresearchintoautismusesindividualswhohave autism as subjects. This research can range broadly. One type includes behavioral research described in chapter 1, such as the Sally-Anne or Smarties false-belief tasks. A second type of research on persons with autism includes minimally invasive research, such as genetic research...