By Tracie Burke | Motion to Quash LLC | May 9, 2020
Representative Joe Stagni has requested a study that goes against basic ethical principles and guidelines for research involving human subjects with autism and other developmental disabilities. HCR 53 EXCEPTIONAL PERSONS: Requests a study concerning a voluntary registry of persons with autism and other developmental disabilities for use by law enforcement professionals. Stagni’s request poses some troubling ethical questions concerning privacy, discrimination, and legal harm. It does not answer the question of what the standard should be for judging how much and what sort of information should be provided for the study.
According to The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research principle guidelines, research involving persons with Autism and other developmental disabilities needs extensive protections.
The National Research Act
On July 12, 1974, the National Research Act (Pub. L. 93-348) was signed into law, thereby creating the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, as well as the Belmont Report and Institutional Review Boards (IRBs). One of the charges to the Commission was to identify the basic ethical principles that should underlie the conduct of biomedical and behavioral research involving human subjects and to develop guidelines which should be followed to assure that such research is conducted in accordance with those principles. In carrying out the above, the Commission was directed to consider: (i) the boundaries between biomedical and behavioral research and the accepted and routine practice of medicine, (ii) the role of assessment of risk-benefit criteria in the determination of the appropriateness of research involving human subjects, (iii) appropriate guidelines for the selection of human subjects for participation in such research and (iv) the nature and definition of informed consent in various research settings.”
Basic Ethical Principles
- Respect for Persons. — Persons with diminished autonomy are entitled to protection. The principle of respect for persons thus divides into two separate moral requirements: the requirement to acknowledge autonomy and the requirement to protect those with diminished autonomy.
- Assessment of Risks and Benefits. — For a review committee, it is a method for determining whether the risks that will be presented to subjects are justified.
The Louisiana Department of Health has already indicated that studies such as HCR 53 are not feasible. House Concurrent Resolution No. 84 of the 2019 Regular Session requested the Louisiana Department of Health to study the feasibility of issuing a special identification card to individuals with an autism spectrum disorder diagnosis and the study that the Louisiana Department of Health produced in accordance with that Resolution indicated, “it is not feasible for the department to issue such identification cards because it has no processes currently in place within which that function could be included.” This volubly confirms that it is not feasible to conduct a discriminatory study concerning the potential use of the NCIC database for creating a registry of persons with autism and other developmental disabilities.
Furthermore, Louisiana law, R.S. 40:2404.2(C), already provides for training of law enforcement officers on interacting with persons who have developmental disabilities. Autism Risk and Safety Management provides training and resources for law enforcement, emergency first responders, parents, educators, care providers, and the autism community. Autism training offers scenarios that describe not only the highest risk autism and law enforcement encounters but strategies designed to lower risk when police officers and first responders interact with autistic citizens and resolve the dilemma of recognizing autism related behaviors and characteristics.
The Nature and Scope of Risks and Benefits
The Assessment of risks and benefits requires a careful arrayal of relevant data, including alternative ways of obtaining the benefits sought in the research. One example, The National Autism Registry (NARY) was started in 1999. The mission is to provide opportunities for individuals with developmental disabilities and their families to engage in community-based experiences that were not available to them due to the difficulties of the individual with developmental disabilities. It was founded by Valerie Herskowitz, a mother of a son with autism, and her husband, Garth Dolderer.
The risks that HCR 53 presents to the subjects are not justified. Joe Stagni appears to be a disablist, contributing to the possibility that harm of autistic individuals may occur. Moreover, a conflict of interest is present since Stagni receives thousands of dollars in contributions issued by medical marketing agencies. This requires review by the Louisiana Ethics Administration.
Austistic populations are already burdened in many ways by their disabilities and environments. When research is proposed that involves risks and does not include a therapeutic component, they should be protected against the danger of being involved in research soley for administrative convenience or political purposes. Call or write to your legislators today and urge them to vote no to partisan bill HCR 53.
Tracie Burke is Louisiana author of Motion to Quash. She can be reached at tracie@motiontoquash.org. Motion to Quash LLC promotes legislation that supports the American Anti-Corruption Act.
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