How geneticists can win more support from the autism community | Domain

Editor’s note

DomainThe house style is lowercase from “autism”, but we made an exception in this case at the author’s request.


Wrigley Klein

graduateNortheastern University

In October, the researchers behind the UK genetics study Spectrum 10k had to halt and reorganize their project after some in the autism community questioned the team’s goals and methods.

This aberration exemplifies the growing tensions between genetics researchers and parts of the autism community and reflects the fact that some in the community are increasingly reluctant to share their genetic material with researchers. One of their primary concerns is that some geneticists are working to “cure” or prevent autism with prenatal testing. They believe that the availability of reliable, non-invasive prenatal tests has contributed to Low prevalence of Down syndrome in Europewhich is an example of modern eugenics, and it is feared that genetic research will lead to similar results for people with autism.

Sure enough, the Spectrum 10k explicitly states that they don’t try it “cure” or “eliminate” Autism. However, some people with autism find it easier to avoid participating in any genetics research than to try to avoid projects that might distort their goals with abstract descriptions, lack data security, or re-share stored genetic information randomly.

I understand why some members of the autistic community feel this way: I am an autistic person, and I study white supremacist violence, including eugenics. Hearing some researchers discuss their visions for the future of autism research often evokes feelings similar to reading about what neo-Nazis want to do with people like me.

As a researcher, I understand the value of good data sets, and as an autistic person, I know that genetic research into the health problems that accompany autism is important. This intersection of my personal and academic experience allows me to simultaneously assess the goals of people with autism and scientists and work towards a collaborative solution.

I have what I believe could be several effective and non-controversial suggestions that could begin to address the concerns of people with autism, and thus increase the likelihood that they will participate in genetics research. My recommendations are not intended to prevent researchers from accessing the data; Instead, they could foster a collaborative relationship between researchers and the autism community, leading to greater availability of genetic data.

FRances Galton, who He coined the term eugenics In 1883, he described his research as an attempt to improve “the racial qualities of posterity both physically and mentally” through science. Attempting to treat autism or prevent autism from being born clearly fits this definition.

Although many genetics researchers do not wish to cure autism, their research can benefit scientists who inadvertently do so. who believes People with autism with severe disabilities cannot enjoy a good quality of life. This view ignores a A large body of research It explores strategies to increase happiness for people with severe disabilities. People working to eliminate people with severe disabilities Under the pretext of They spare these people from misguided suffering. The goal of treating or eliminating people with severe disabilities also violates the 1997 UNESCO and Human Rights Universal Declaration on the Human Genome and Human Rights.

People with autism are reluctant to share their genetic material because they often end up in large databases readily available to qualified researchers at universities, private companies or medical institutions who apply for access. Once the database delivers genetic information, the information can quickly change and be used for purposes that are anathema to an autism study participant.

Most of these large databases fail to meet the privacy standards set out in the UNESCO Declaration for the Protection of Identifiable Genetic Data, because researchers are getting better at Redefining certain types of genetic data. An example of such privacy failures is MSSNG, a database of genetic material created by Autism Speaks and Google Currently hosting Over 11,300 whole genome sequences on a cloud-based system. MSSNG shares data sets with academic institutions internationally. However, databases hosted on the cloud are routinely hacked.

In addition, MSSNG does not specify which countries it shares its data with. human rights groups and Academic Publishers They criticized China, for example, for conducting unethical genetics research, such as Human CRISPR-Cas9 Trial And the Observation attempt by short tandem repetition that occur on the Y chromosome. Researchers in countries with low ethical standards can access MSSNG data, either through an app or through hacking.

Large-scale databases also struggle to comply with the intellectual honesty requirements of the UNESCO Declaration, which states that those involved in genetics research should be required to give informed consent to every project that analyzes their data. Most databases grant access to their datasets once the dataset owner agrees to the request, but people who have contributed their genetic material do not have the opportunity to decline consent to the new research.

Some organizations are less clear about how they share data. Says Spectrum 10k, who is reviewing his curriculum after backlash from the autism community Planning to share their data With researchers “whose goals are aligned with our efforts to improve the well-being of people with autism.” But “well-being” is just an abstraction, and Spectrum 10k doesn’t define the term in this context, giving the project plenty of legal freedom to share data with whomever they want.

sThis ambiguity highlights another reason why people with autism do not trust autism genetics. As recently as 2016, Autism Speaks said frankly that he was researching the genetic origins of autism to create a treatment. Now she publicly denounces this goal and says her work will lead to treatments for health problems associated with autism, but most of her research looks the same. Article 17 of the UNESCO Declaration encourages solidarity between researchers and participants; Ambiguous statements about search results go against this goal.

The failure to make informed consent accessible to persons with intellectual disabilities who are their legal guardians also violates this solidarity. People with severe disabilities with autism are concerned about the impact genetic research can have on their lives. Some projects generate non-binding documents that summarize informed consent, but these documents tend to be generated internally and paint the research in the best light. Instead, a neutral third party, such as a disability rights law firm, should draft accessible informed consent documents. usual mode can reach And the traditionalists Side by side informed consent documents easily show how the former often leave important information for people with intellectual disabilities.

Good intentions do not prevent research from doing harm, and geneticists are not always in a better position to see the long-term effects of their work. Sociologists, especially disabled sociologists, can play an important role in promoting solidarity and enforcing research ethics in the field of autism. Article 16 of the UNESCO Declaration recommends the establishment of multidisciplinary ethics committees to consider the implications of research projects in genetics. It doesn’t happen publicly, but this type of supervision is uniquely important, given the history of eugenics against people with autism and the persistent skepticism that many in the autism community turn toward geneticists.

Ultimately, to gain greater participation from the autism community, geneticists must adhere to the 1997 UNESCO Universal Declaration on the Human Genome and Human Rights: they must secure their databases to the point where they can identify genetic data, and require database participants to sign a declaration enlightened. Approve each project for which their data is used, provide informed consents that can be accessed by a third party, and involve sociologists with disabilities in the development of research.

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