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First Published Wednesday, 4 March 2009


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In January 2009, the Autistic Self Advocacy Network submitted the following
testimony to the NJ Department of Human Services, which had published draft
regulations in reference to the creation of an autism registry, at that
juncture mandated by legislation. Given that the registry’s creation had
already been established, our comments were oriented at ensuring that it
would be implemented in such a fashion as to respect the privacy rights of
autistic people and avoid unauthorized disclosure of information and
unethical research practices.


COMMENTS ON PROPOSED N.J. AUTISM REGISTRY REGULATIONS

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<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
aneeman@autisticad vocacy.org<aneeman@autisticadv ocacy.org>.
Further information about The Autistic Self-Advocacy Network can be found at
http://www.autistic advocacy. org <http://www.autistic advocacy. org/>


Ari Ne’eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autistic advocacy. org
732.763.5530



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