Ethics of Experiments on Children

Handbook of Intellectual and Developmental Disabilities

“…Although some authors have taken a stand against conducting such research (Edwards, 2000), most writers have supported research with some limitations: appropriate consent of a surrogate (Freedman, 2001), a cost to people with ID if important research is not done (i.e., a palliative or curative intervention for a related health condition cannot be studied; Haywood, 1977). A famous editor of the New England Journal of Medicine has weighed in on research for children with and without ID (Ingelfinger, 1973), controversial researcher at Willowbrook has set forth arguments that support his hepatitis studies (Krugman, 1986), and others have argued in favor of general acceptance of important research (Weisstub & Arboleda-Florez, 1997;Weisstub, Arboleda-Florez, & Tomossy, 1996). Even though many authors support research in general, there are numerous other problems that have been mentioned: often difficult dilemmas arise (Baudouin, 1990), participation may conflict with emphasis on protecting the rights of the person with mental impairment (Clayton, 1972), and individual rights may come into conflict with the state government aims and rights (Davis & Mahon, 1984).…”

Flexner's ethical oversight reprised? Contemporary medical education and the health impacts of corporate globalisation

“…Examples, frequently highlighted in contemporary medical ethics education, include the questionable research identified by H K Beecher, 28 the Tuskegee syphilis experiment, 29 the Bristol Royal Infirmary paediatric cardiac surgery inquiry, 30 the Harold Shipman inquiry 31 and numerous other whistle blower‐initiated inquiries into hospital care 32 . Complacent and counter‐ethics professional cultures, or hidden curricula, have been indicted in many such investigations 33 …”

“…32 Complacent and counter-ethics professional cultures, or hidden curricula, have been indicted in many such investigations. 33 Medical education probably never will nor should escape condemnation for the ethical failures of professional practice. Such well publicised scandals have undoubtedly been a factor in the movement within contemporary curricula towards paying greater attention to ensuring students are acquainted with basic norms of bioethics and their potential conflict with public health law.…”

Research participants with mental disabilities: The more things change.

“…Critics also questioned the adequacy of information provided to parents and reported that some parents had been told that their children could be admitted to the facility only if the children were enrolled in the study (Beauchamp & Childress, 1994). Although the Willowbrook research became the target of media and scholarly criticism, the study was defended by the editor of The New England Journal of Medicine (Ingelfinger, 1972), and the investigator was later awarded the Lasker Prize for his research achievements (Rothman, 1991).…”