Genetic testing presents a complex set of legal challenges, particularly in balancing privacy concerns with the potential medical advances it offers. The rapid advancements in technology have significantly improved the accuracy of genetic testing and analysis, leading to a dramatic increase in the amount of genetic information generated, analyzed, shared, and stored by diverse individuals and entities
.
Balancing Privacy and Medical Advances
Recent advances in technology have made it possible to examine DNA directly with increasing accuracy and decreasing cost, contributing to the dramatic growth in genome-based approaches, such as exome- or genome-based sequencing, which can provide dramatically more information than single-gene tests
. This has led to the need for broadly applicable legal principles for genetic privacy, as the diversity of actors and their interests, coupled with the wide variety of ways genetic data are held, make it difficult to develop such principles
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Legal Protections and Challenges
The legal landscape surrounding genetic testing is rapidly evolving. There are ongoing discussions about the need for new rules to protect genetic privacy, with considerations about the unique nature of genetic information compared to other sensitive medical information
. Additionally, the use of genomic testing has gone from rare to routine in many clinical settings, introducing new risks to patient privacy, which must be addressed
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Recommendations and Considerations
In light of these challenges, there have been recommendations for the implementation of mechanisms for advance review of new genetic testing to ensure adequate protections for autonomy, privacy, confidentiality, and equity
. Furthermore, as clinical genetics evolves and the complexity of genetic/genomic test information within electronic health records increases, there is a need to appropriately protect this information to secure the trust of patients and support interoperable electronic health information exchange
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