Vote No to HCR 53 Study Concerning Registry of
Persons With Autism
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
1. 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.
2. 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 ipso facto a disablist, contributing to the possibility that harm of
autistic individuals may occur. Moreover, a conflict of interest is present
because 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.