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Ethical Issues Related to Research On Siblings

Saturday, 4 May 2013: 09:00-13:00
Banquet Hall (Kursaal Centre)
B. Siegel, University of California, San Francisco, San Francisco, CA
Background: Having a child with an autism spectrum disorder (ASD) is a major life stressor.  These stressors have clear reciprocal antecedents between the child with ASD and his/her parents.  In addition, typically developing siblings also are impinged by the autism-related stressors of their parents, as well as by the maladaptive symptoms of their affected siblings. There is relatively sparse empirical literature on psychosocial outcomes in adults siblings, though it has been found that the unaffected siblings’ gender and birth order have some predictive validity with respect to adult family role relationships.  Less amenable to empirical study have been ethical issues raised when examining the culture of families living with autism and rearing both affected and unaffected siblings together.

Objectives: Research & Diagnostic Issues:  1) When and how to couch a discussion of possible ASD or broader autism phenotype (BAP) in an incidentally-observed young sib?  What are the ethical challenges in infant sib research, i.e., early sensitization to risk for ASD in a child who develops completely typically?  2) How to accomplish research on affected pedigrees without over-representing recurrence data such that it may lead to stoppage (birth of further children) despite actual etiologies that may be epigenetic or due to de novo mutations? 3)  In the future, when parents can know whether a fetus will develop some form of autism, will parents have any moral obligation to unaffected sibs as they decide whether or not to have an a affected child?

Parent Issues: 1) Is the sibling being conceived of, and born to be a role model  when young, and/or ‘brother’s keeper’ when an adult? 2) If becoming one’s brother’s keeper is made an explicit expectation to adult sibs, what is that sib’s moral and ethical obligation to fulfill this role?  3) Are siblings conferred moral obligation to be a helper to affected sib (the ‘There but for the grace of God go I’ conundrum)?

Sibling Issues:  (Inter-personal) 1) What effect is there on moral development if an unaffected sib’s sense of ‘right’ forms around dual behavior standards for him/herself and for his/her affected sib?  2) (Intra-personal) How can/should therapists help unaffected sibs struggling with antipathy to a sib with ASD, or with disentanglement from an enmeshed family system resolve these issues so as to pursue his/her own life goals?

Methods: These issues will be explicated, and qualitatively illustrated by narrative responses to these questions provided by siblings of adults with autism 21-26 years old being followed in a prospective study by the author and colleagues. 

Results: Adult siblings run the gamut from those physically detached and struggling to be productive, attributing difficulties to their family of origin to those altruistically pursuing graduate careers (e.g., from neuroscience to design of residential communities for adults) as a result of their rearing experiences. 

Conclusions: These, as well as ‘intermediate’ outcomes that siblings link to their rearing will be discussed in the context of siblings’ birth order, gender, and degree of disability in their sibling.

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