Secretary of Health and Human Services Robert Kennedy Jr. announced a study that violates the National Research Act. It goes against basic ethical principles and guidelines for autism research. He requests a study using an involuntary registry of persons with autism to create a database.
According to the National Research Act, this poses some troubling ethical questions of privacy, discrimination, and legal harm. It does not define the standard for judging the quantity of information. Nor does it specify what information should be provided for the study.
The National Research Act
The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research provides principle guidelines. According to these guidelines, research involving persons with Autism and other developmental disabilities requires extensive protections.
The National Research Act (Pub. L. 93-348) was signed into law on July 12, 1974. It established the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. Also, it introduced the Belmont Report and Institutional Review Boards (IRBs).
The Commission identified basic ethical principles for biomedical and behavioral research involving human subjects and defined these principles clearly. Then, it developed guidelines to make sure such research follows those ethical principles.
Factors
In carrying out the above tasks, the Commission considered several factors:
- Examined boundaries between biomedical and behavioral research and the accepted and routine practice of medicine.
- Assessed the role of risk-gain criteria in determining the appropriateness of research involving human subjects.
- Defined the nature and definition of informed consent in various research settings.
Based on this, the Commission developed appropriate guidelines for selecting human subjects for participation in research.
Basic Ethical Principles
- A review committee uses Assessment of Risks and Benefits to decide if the risks presented to subjects are justified.
- Persons with diminished autonomy are entitled to protection.
- The principle of respect for persons divides into two separate moral requirements. Firstly, is the need to acknowledge autonomy. Secondly, is the obligation to protect those with diminished autonomy.
Thus, it is unethical to conduct a discriminatory study for the potential use of an autism database. Clearly, creating an involuntary registry of persons with autism and other developmental disabilities is wrong.
The Nature and Scope of Risks and Benefits
The National Research Act states an assessment of risks and benefits requires a careful arrayal of relevant data. This includes different ways of obtaining the benefits sought in the research.
The risks that RFK’s proposal presents to the subjects are unjustified. Kennedy appears to be ipso facto a disablist, contributing to the possibility that harm to autistic individuals will occur.
The cause of Autism
The exact cause of autism is complex. Genetics is the strongest factor considered and it contributes to the development of autism spectrum disorder (ASD). According to UCLA Medical School, research indicates that 80% of autism risk is linked to inherited genes. Environmental factors and random mutations play a smaller role.
Additionally, a Twin study shows that about 90% of the variation in autism can be attributed to genetic factors.
Conflict of Interest
A conflict of interest exists since Robert Kennedy still maintains financial interests in anti vaccine lawsuits. This requires a review by the Office of Government Ethics.
Autistic populations are already burdened in many ways by their disabilities and environments. When proposed research involves risks and lacks a therapeutic part, basic ethical principles guarantee their protection. Hence, they must not be involved in research solely for administrative convenience or political purposes.
Call or write your legislators!
Call or write to your legislators today and urge them to oppose Robert Kennedy’s unethical autism registry. Click here to contact US Congress
Recognized by the National Whistleblower Center, Tracie Burke is Louisiana author of Motion to Quash. She can be reached at tracie@motiontoquash.org. Motion to Quash LLC successfully promoted legislation for the Whistleblower Protection Act. Please Support journalism in the public interest by contributing today. Click here to donate Motion to Quash ISSN 2644-1594 is the copyrighted property of Motion to Quash LLC .
