Who really owns personal genetic information; and who has access to a person’s genetic data? Genetic information is becoming more accessible as well as affordable and there are new issues emerging daily concerning an individual’s right to protect this personal information about themselves. Privacy rights become an issue as laws determine if a person has control over how and when their information is to be used. In some cases, it seems like individuals are having to forfeit their ownership and rights to access or control their own data.

Implications of an individual’s genetic information?

Huge databases are being compiled by genomics companies. They collect various types of genetic data, medical histories and phenotype information from clients. There are two very important characteristics about genetic data that make privacy issues and who owns it priority matters.

  • The durability of the data
  • The relevance of the data to family members

Genetic information about an individual will not change over time. This means that once it has been disclosed it cannot be reclaimed by any party. Most people share genetic information with the rest of their family members so when it is shared with a third party, all family members, past, present and future also had their information shared but without their consent.

Privacy should be Emphasized when it comes to Genetic Data

It is important for industries and those who regulate the sharing of information to be concerned about privacy and ownership as it applies to genetic information. GINA is a law which addresses issues pertaining to discrimination after an insurer or an employer is granted access to genetic information. However, there are no laws or regulations which assign ownership of such data. HIPAA’s privacy protections are not always applicable since genomics companies are not considered to be “covered entities” according to privacy rules.