Publications on Genetic Discrimination and the Acceptance of Data Use in Medicine

RWTH professor Torsten Voigt and teams of authors publish research results relevant to Covid-19

 

Professor Torsten Voigt from the Technology and Diversity Teaching and Research Area at RWTH Aachen University has published two articles in international journals. In Nature Genetics, he and other authors introduce the International Genetic Discrimination Observatory, whose research is relevant in the context of Covid-19. The European Journal for Human Genetics deals with the willingness to use data in medical and genetic research contexts. These issues are also of interest to the current pandemic.

Genetic discrimination

The International Genetic Discrimination Observatory, based at McGill University in Montreal, Canada, was founded in 2019. Scientists from 19 nations work here on issues relating to genetic discrimination, refering to individuals or groups being treated unjustly or prejudicially based on their genetic characteristics. Little is known worldwide about the extent and frequency of genetic discrimination.

Numerous developments, in preventive medicine, for example, depend on the evaluation of genetic data from patients and participants in scientific studies. However, the discussions highlighting the possible misuse of this information hamper many research approaches. Citizens who fear genetic discrimination are also less willing to make data available for scientific studies. As a member of the International Genetic Discrimination Observatory, Professor Voigt analyses the likelihood and risks of genetic discrimination in Germany. He develops proposals for dealing with genetic discrimination and specific recommendations for action for politicians.

Genetic research plays a crucial role in the fight against Covid-19. There is a danger that people will be disadvantaged due to genetic predispositions, for example, because certain drugs do not work for them or because they are treated differently being in a risk group. To prevent discrimination in this context is one of the goals of the Voigt working group.

The publication titled “Establishing the International Genetic Discrimination Observatory” in “nature genetics” is available at https://doi.org/10.1038/s41588-020-0606-5.

Acceptance of medical data use

In the international study, “Your DNA, Your Say,” people in 22 countries were asked about the use of personal data. At RWTH, a representative sample of 1,506 respondents was taken for Germany. The willingness of people to make their medical and genetic data available for research is lower in Germany (56 percent) than in English-speaking countries (67 percent). The researchers explain this with the “right to informational self-determination,” which plays a significant role in public discourse in Germany. Citizens see it as their responsibility to carefully examine how personal data are used, to protect essential rights and to serve the common good. Another result of the study is that people who are familiar with genetics are more willing to make their personal data available for research. This shows that genetic information and education can significantly increase the acceptance and support of medical research.

In the context of Covid-19 and the central role that evidence-based medicine plays in this extraordinary situation, this study conducted at RWTH Aachen University provides crucial insights into the conditions under which people are willing to share personal information with medical experts, non-profit or private research institutions.

The article titled “Willingness to donate genomic and other medical data: results from Germany” in the European Journal for Human Genetics is available at https://doi.org/10.1038/s41431-020-0611-2.