What is genetic information?
Genetic information is the blueprint of our body and is a general term for the information contained in DNA. By analyzing genetic information, it is possible to determine the risk of hereditary diseases, physical characteristics, and ancestral roots. However, because this information contains personally identifiable information, it must be handled with care.
Why is the privacy of genetic information important?
Genetic information is richer in information that uniquely identifies an individual than other personal information. This raises concerns about the risk of medical insurance discrimination, employment discrimination, and even privacy violations if genetic information is compromised. For example, discrimination in medical insurance based on genetic information is prohibited in the U.S. under the Genetic Information Nondiscrimination Act (GINA), but Japan has yet to develop laws regarding the privacy of genetic information.
Major Risks Related to the Protection of Genetic Information
- Risk of information leakage
Genetic information is generally stored digitally, and the risk of hacking and information leakage exists. According to a recent survey, many genetic analysis companies have strengthened their cybersecurity, but still cannot guarantee complete security. - Unauthorized provision to third parties
Some companies may provide genetic information to third parties. For example, in some cases, the information is provided for collaborative research with research institutes or pharmaceutical companies, but it may be provided without the user’s consent, which may lead to privacy violations. - Challenges in Anonymizing Genetic Data
Because genetic information is personally identifiable, it is difficult to anonymize it. The latest research also points to the possibility of identifying individuals even from completely anonymized genetic data.
Laws and Regulations for Privacy Protection
Different countries around the world have enacted different laws regarding the privacy protection of genetic information.
- United States
The U.S. GINA Act prohibits discrimination on the basis of genetic information. In particular, it covers discrimination in the areas of employment and insurance. - Europe
The European Union’s GDPR (General Data Protection Regulation) treats genetic data as a type of personal data and requires strict protection. There are strict restrictions on the collection and use of personal data and user consent is required. - Japan
In Japan, there is no clear law regarding genetic information, but the “Personal Information Protection Law” is applied in some cases. In the future, regulations specific to genetic information are required to be developed.
Measures to Protect the Privacy of Genetic Information
- Use a reliable genetic analysis service.
When using a genetic analysis service, choose a company that clearly explains its privacy policy and information handling practices. Companies that have obtained certification for privacy protection are considered to meet certain security standards. - Check the data sharing settings.
Many services can be set up to share genetic information data. Check whether your data will be shared with third parties and change the settings if necessary. - Take security measures.
Security measures such as stronger passwords and two-step authentication are recommended for platforms that handle genetic information.
Conclusion
While the use of genetic information is increasing, so is the importance of protecting privacy. Understanding how your genetic information is handled and taking appropriate measures can help you avoid unnecessary risks. It is expected that laws and regulations concerning the handling of genetic information will continue to be developed in the future.
References
- National Human Genome Research Institute: GINA
- European Union: GDPR and Genetic Data
- Journal of Medical Ethics: Genetic privacy and discrimination
