one stays in school, to the chances of developing Alzheimer’s disease and breast cancer. While our genes do not determine our destiny, businesses may see genetic information as useful for evaluating risks and generating profits, as stated in a perspective article. The scientists emphasize the importance of creating policies to address ethical and policy issues related to the collection of genetic data.
school can help identify individuals who may be at risk for developing Alzheimer’s disease and breast cancer. While genetics do play a role in determining our health, it is important to consider the ethical and policy implications of using genetic data for corporate profit. According to a recent article in The American Journal of Human Genetics, there is a need for regulations to address these concerns. At-home DNA tests have become popular for obtaining information about family history and potential health risks through a simple saliva sample. These tests also allow for genetic risk screening of embryos.Fertility clinics now offer genetic tests using polygenic scores, which are collections of genetic variations that impact specific traits. While these scores are effective at predicting traits in large groups, they are not as effective at an individual level.
According to economist and co-author Nicholas Papageorge of Johns Hopkins University, there has been a belief that companies would not be interested in using this information at an individual level due to its limited usefulness. However, this is not entirely accurate. Companies operate with a great deal of uncertainty and even minimal information can be valuable.
The researchers used an economic model to demonstrate that companies could potentially find value in a consumer’s polygenic score, even if it is not entirely accurate as a predictor. This is because the information could still lead to increased profits and is relatively inexpensive. For example, an insurance company could use a person’s polygenic score to adjust their offerings, deny insurance coverage, or raise premiums based on their risk of cognitive decline or risky behaviors.
One of the co-corresponding authors, who is a legal scholar, suggests that there may be surprising benefits to using this data that could improve overall welfare.
The researchers, along with bioethicist Michelle Meyer of Geisinger College of Health Sciences, suggest that financial service companies could create products to simplify financial decision-making or provide error monitoring services for individuals at high polygenic risk of Alzheimer’s. However, they believe it is the responsibility of the company to establish and assist in the development of appropriate measures to prevent unethical uses. The researchers contend that existing laws and policies are insufficient to handle the ethical, privacy, and legal issues related to the possible corporate use of polygenic scores. This includes the US Genetic Information Nondiscrimination Act.The Act prohibits discrimination in health coverage and employment based on genetic information, but there are some loopholes. It only applies to health insurance and does not include long-term, disability, life, and other forms of insurance. Additionally, it does not extend to employers with fewer than 15 employees, which make up 85% of US companies.
Meyer emphasizes the need for action, stating, “This is a wake-up call to people and to those who are in a position to act. We need to put things in place now — or yesterday.”
Papageorge points out the long-term implications of sharing genetic information, saying, “I don’t think people realize that when they give up their genetic information today, they’re not giving it up just for today; they’re giving it up forever.”When there’s new research, scientists gain a better understanding of individuals.
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