World News | Gene discrimination and the specter of the future

Montreal, Feb. 27 (360info) Unless people engage in conversations about genetic discrimination, a dystopian scenario could ensue.

In 1981, Marvel Comics released a storyline for the Amazing X-Men series titled Days of Future Past. In its dystopian future, a race of mutants, carriers of unique genetic mutations, are hunted by giant robots and held in concentration camps.

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It’s an over-the-top sci-fi tale—which was turned into a Hollywood blockbuster—and read by kids all over the world.

But in 2023, we will enter an era where sequencing an individual’s genome for health or identification purposes has become routine. The benefits are many, ranging from public health to disease prevention and personalized medicine. But can genetic information also be used to discriminate against individuals and oppress vulnerable groups like “Days of Future Past”?

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Interestingly, the first genetic discrimination predates the days to come. In the late 1970s, the United States’ mandatory genetic screening program for sickle cell disease, a group of inherited blood disorders, adversely affected the black population, who were unable to obtain employment or health insurance after testing positive.

Although receiving high attention in the media, such events involving rare genetic disorders and related events are relatively uncommon due to technical limitations and poor understanding of the genome.

Seventy years ago this week, the structure of the DNA molecule was revealed. The first outline of the human genome was published 23 years ago, and details are continually being added. Now that genomic science and technology are delivering terabytes of data, and revisiting the days to come, it’s hard not to avoid a sense of discomfort surfacing.

Existing investigations of genetic discrimination are too varied and limited in scope to allow any meaningful assessment of its prevalence. But available evidence does suggest that there is genetic discrimination, and that it occurs primarily in people with mutations in a single gene that predispose them to late-onset severe disease (eg, Huntington’s disease).

North America, Western Europe and some other countries have passed laws to prevent this kind of discrimination. However, these laws are struggling to keep pace with technological advances in genetic and DNA research.

Due to the exponential growth of research databases and direct-to-consumer genetic services, a major challenge is that genomic data is becoming more accessible and more easily linked to individuals. In fact, the genetic information for most individuals or relatives from European ancestry already exists somewhere in a genetic database.

Genomics is increasingly playing a role in healthcare in areas such as pandemic prevention, the development of precision therapies, and complex diseases involving the interaction of multiple genes and environmental factors. These are all new uses, and it’s uncertain whether these were included in the non-discrimination laws passed decades before genomic medicine became ubiquitous.

Like other types of discrimination, genetic discrimination remains difficult to prevent in practice. For example, most laws focused on preventing discrimination are based on genetic testing results.

So it’s not illegal for some insurance companies to ask if someone has been referred to see a clinical geneticist or genetic counselor. They use this as a go-around for underwriting purposes. The case law of at least one country (Denmark) already recognizes the validity of such investigations, casting a huge shadow over the scope of protection afforded by existing genetic non-discrimination laws.

Another sensitive area that was neglected until recently is the use of genetic information by national governments and their agencies. A person’s DNA profile is a rich source of information about an individual’s ancestry, identity, and health.

Governments are increasingly looking to use it in areas such as national security, crime prevention, immigration and the delivery of public health services. In many of these cases, government use of genetic information will serve the public interest. But only if it is regulated by a transparent and robust governance framework that respects human rights and medical ethics.

In several countries, including the United States, Canada and Germany, government agencies have attempted to use genetic data for the public good, leading to incidents of discrimination and stigmatization. Such incidents, if they continue, could stigmatize genetic information and undermine public trust in genomic research.

Of particular concern is that several governments, including Kuwait and China, have envisioned creating a national database that would include the genetic profiles of all citizens or entire population groups in the country to facilitate surveillance and crime prevention. Such scenarios open the door to a dystopian society, such as the one depicted in Days of Future Past.

Given that current national approaches to combating genetic discrimination are largely ineffective, the International Observatory of Genetic Discrimination was established in 2018 to identify and prevent genetic discrimination worldwide through collaborative multidisciplinary research, decision-making, tool development and advocacy. discriminate.

More effective and affordable genetic screening has the potential to significantly improve healthcare. However, improvements will only be achieved if individuals around the world have sufficient confidence that their information will not be misused. (360info.org)

(This is an unedited and auto-generated story from a Syndicated News feed, the content body may not have been modified or edited by LatestLY staff)