Introduction
Direct-to-consumer genetic testing has become accessible and easy for the population, and people can order such services online. Testing requires a few simple steps from customers: collecting DNA samples, sending them to the company, and waiting for results. Later, consumers receive data on the likelihood of developing various diseases, the presence of recessive genes, which carry risks for future generations, or ancestry data (Horton et al., 2019). Despite the testing benefits for developing medicine and people’s health, its implementation has several contradictory aspects.
Consumer Genetic Testing
Companies conducting testing can use consumer data for purposes determined by organizational policies. For example, they can apply DNA in scientific research or to improve their service. However, some companies also share data with third parties, which, in unregulated conditions, can have negative consequences (Hendricks-Sturrup & Lu, 2019).
It is necessary to provide consumers with clear and understandable terms of use and obtain consent from them to use the data, preserving confidentiality. Customers should choose whether their DNA can be used and for what purposes, or if it should be destroyed (Hendricks-Sturrup & Lu, 2019). This possibility should be provided in the case of a partner transferring samples or selling them.
The commercial component of this issue may change the company’s priorities from protection to profit. Therefore, the selling process should also have specific regulations: obtaining informed consent from customers, being aimed only at benefits, like scientific research, and including advantages to the customers, such as lower cost of services. However, ensuring that the terms of use are clear and understandable for consumers with different levels of education and that people’s privacy is protected is critical (Hendricks-Sturrup & Lu, 2019). Careless disclosure of data carries risks that can affect a person’s entire life.
Conclusion
Genetic information is sensitive data that can be used against an individual. Testing can lead to discrimination, especially on the issue of health insurance, when insurance companies refuse to provide services or increase the price due to the health risks described (Bélisle-Pipon et al., 2019; Fremgen, 2019). Various countries strive to solve the problem and balance the interests of patients and insurance companies (Bélisle-Pipon et al., 2019). Problems can also arise if information about ancestry is disclosed and bias is formed. Therefore, people should not publish and reveal their and their children’s DNA profiles online to avoid discrimination.
References
Bélisle-Pipon, J. C., Vayena, E., Green, R. C., & Cohen, I. G. (2019). Genetic testing, insurance discrimination and medical research: What the United States can learn from peer countries. Nature Medicine, 25(8), 1198-1204. Web.
Fremgen, B. F. (2019). Medical law and ethics (6th ed.). Pearson.
Hendricks-Sturrup, R. M., & Lu, C. Y. (2019). Direct-to-consumer genetic testing data privacy: Key concerns and recommendations based on consumer perspectives. Journal of Personalized Medicine, 9(2), 1-7. Web.
Horton, R., Crawford, G., Freeman, L., Fenwick, A., Wright, C. F., & Lucassen, A. (2019). Direct-to-consumer genetic testing. BMJ, 367, 1-6. Web.