CHANGES ARE NEEDED TO ADDRESS PRIVACY CONCERNS AND THE POTENTIAL FOR STIGMA AND MISLEADING DATA.
The Division of Family Health Services has proposed new rules and amendments at N.J.A.C. 8:20 to establish a birth defects registry, which would include an autism registry and a severe neonatal jaundice registry. The Autistic Self Advocacy Network has several concerns about the autism registry proposal: (1) The use of the term “birth defects” is inaccurate and stigmatizing as applied to autism; (2) Alternatives to the use of personally identifying information should be implemented; (3) An opt-in, instead of opt out, procedure for personally identifying information should be used; (4) A civil cause of action for the revealing of personally identifying information should be created; (5) Data obtained from the registry is likely not to be comprehensive given the number of autistic individuals who are undiagnosed; and (6) Written consent along informed consent guidelines should be required for the use of registry information in research.
▪ “Birth defects” ordinarily refers to conditions such as severe neonatal jaundice that result from factors associated with pregnancy. Registries track the occurrence of such conditions for the purpose of improving prenatal and neonatal care. Autism, however, has not been shown to be caused by events that occur during pregnancy. Rather, autism is a developmental disability that reflects genetic differences. As such, the term “birth defects” is inappropriate and has a significant potential to stigmatize the autistic population by characterizing citizens on the autism spectrum as defective. The Autistic Self Advocacy Network recommends that the term “birth defects” not be used in connection with an autism registry or any autism-related initiatives.
▪ Alternatives to the use of personally identifying information should be carefully considered and should be implemented to the fullest extent possible. As stated in the Recommendations on Confidentiality and Research Data Protections adopted by the National Human Research Protections Advisory Committee (http://www.hhs.gov/ohrp/nhrpac/documents/nhrpac14.pdf), “Protocols should be designed to minimize the need to collect identifiable data by determining whether there is a legitimate reason to collect or maintain identifiers. Data can often be collected anonymously, or the identifiers can be removed and destroyed after various data have been merged.” Moreover, where unique identifiers are needed for research purposes, they can consist of unique codes, instead of personally identifying information. The Autistic Self Advocacy Network recommends that if an autism registry is created, alternatives to the use of personally identifying information should be developed and offered.
▪ Opt-in is necessary to ensure the public’s understanding of the privacy rights of citizens on the autism spectrum and their families. Individuals on the spectrum and their families should be required to opt-in to offering identifying information rather than be required to opt out if they decide they do not want to. The opt-out procedure currently proposed would not necessarily result in informed decision-making by parents who might be unaware that they had the right to opt out. Parents who have just received an autism diagnosis for a child often feel overwhelmed by all of the information that they receive concerning services and therapies, and a notice about an opt-out process might be overlooked. The Autistic Self Advocacy Network recommends that if an autism registry is created, an opt-in procedure should be used for all personally identifying information. We furthermore recommend that this is particularly vital if said registry is extended to the autistic adult population.
▪ A civil cause of action for unlawful disclosure of personally identifying information would help to ensure that privacy rights would be taken seriously by all involved. The existence of an autism registry, in and of itself, creates a significant potential for stigma and discrimination because most disabilities do not have mandatory reporting. State-mandated collection of personally identifying information on citizens on the autism spectrum suggests that autism is unlike other disabilities and could result in a negative public perception of autism. Strong measures are necessary to prevent potential harm. The Autistic Self Advocacy Network recommends that if an autism registry is created, a civil cause of action for unlawful disclosure of personally identifying information should also be created.
▪ Incomplete data is likely because a significant number of children on the autism spectrum do not receive a formal diagnosis. Some parents, concerned about the possibility of stigma and discrimination, choose not to seek a diagnosis. Other parents are simply unaware that their child has autistic traits. Consequently, data obtained from an autism registry may not be comprehensive and could give rise to misleading research results. The Autistic Self Advocacy Network recommends that if an autism registry is created, clear statements should be made indicating that the data may not be comprehensive.
▪ Written consent should be obtained in a manner similar to the informed consent procedures that are required to be used in research studies. At the time of diagnosis of a child, the parents could be given a consent form about the registry, which they would need to read, understand, and sign before any identifying data could be entered. The consent form would explain what the data was, how it would be used, the choices that the parents had regarding consent, the risks and benefits involved, the privacy concerns, who had access to the data and under what circumstances, and how to opt out at a later date. The Autistic Self Advocacy Network recommends that if an autism registry is created, written consent along informed consent guidelines should be required.
Compiled by ASAN Board Member Meg Evans. Direct questions to Ari Ne’eman of the Autistic Self Advocacy Network at firstname.lastname@example.org
Further information about the Autistic Self Advocacy Network can be found at https://www.autisticadvocacy.org