Personal Genome Project

Is Sharing Genetic Profiles on the Internet Harmful or Beneficial?

Oct 20, 2008
Suzanne Pitner

DNA Strand - Rodolfo Clix

Making DNA information available to scientists can speed research into medical conditions, yet may also lead to a loss of privacy.

A recent article in the New York Times * by Amy Harmon, dated October 19, 2008, revealed that the Personal Genome Project, or PGP, through Harvard University, is hosting a research project in which consenting people will have their personal genomes available on the World Wide Web for scientific study.

Benefits of Genetic Studies

The purpose of this project is to allow researchers and scientists access to a larger public pool of data for study. Through their studies, they hope to find causes and cures for diseases that now plague humankind. In addition, they may be able to develop proactive treatments for diseases and conditions years in advance of their actual emergence.

According to the PGP consideration page, volunteers should expect "full public data release and to purposefully exclude any promises of permanent confidentiality or anonymity."

The PGP aims to assist in increasing scientific and medical knowledge for the benefit of humanity through their volunteer cohorts. Taking part in it is a noble gesture. While an honorable motive, this public disclosure of DNA profiles raises some interesting questions.

Will It Cause Discrimination Based on DNA Information?

The Genetic Information NonDiscrimination Act of 2008, or GINA, protects against discrimination by health insurers and employers on the basis of DNA information. However, if someone has access to a person’s genetic profile, it could affect decisions made regarding that person. It’s possible a consumer could be denied financial products, disability insurance, or life insurance products.

Is It An Invasion of Privacy to Others That May Share Genetic Material, Such as Siblings, Children, or Parents?

While a person submitting a genetic profile to the PGP does it voluntarily and with full knowledge of the possible consequences, it may reveal information that peripheral family members prefer to keep undisclosed. A sibling or child may not wish to have a relative’s genetic profile on the World Wide Web, as it could lead to inferences about his own genetic profile, even if he wants to keep it private.

Will It Be Used to Find the Fittest Job Candidate, Rather Than the One Best Suited to the Job?

People being who they are, it will be hard not to be influenced by a genetic profile of one candidate in extraordinary health, and another with predispositions toward an unhealthy condition. While that person may never develop the condition, the thought in the recruiter’s mind is still there, “It could happen.” Even with anti-discrimination laws in place, those with open genome files run the risk of discrimination.

It’s important to remember that whatever the future brings, once the genomes are on the World Wide Web, they remain there for perpetuity. One cannot decide to divulge their DNA profile one day and take it back the next.

Therefore, before participating in the PGP or any other genome research project, one should be well informed about the issues that may affect the future of the participant as well as family members.

*Registration may be required to access the New York Times article.

References:

Goetz, Thomas, "How the Personal Genome Project Could Unlock the Mysteries of Life", Wired Magazine, July 26, 2008.

Representative Slaughter, and MacIntosh, Louise, Legislation H.R. 493, To Prohibit Discrimination on the Basis of Genetic Information With Respect to Health Insurance and Employment, January 16, 2007.

Roche, Patricia A., J.D., and Annas, George J., J.D., M.P.H., DNA Testing, Banking, and Genetic Privacy, The New England Journal of Medicine, Vol. 355: 545-546, August 10, 2006

Response to Comments:

To Alicia Mae Prater,

Thanks for your comment. You may note from the article that the PGP is allowing public disclosure of these personal genetic profiles, thus not using standard double-blind research protocol. Also, as the scientific study of genetics advances, more information will become available from the human genome making discriminatory profiling more of a possibility.

Suzanne Pitner - Suzanne Pitner is a teacher and published writer. A member of RWA and YARWA, she writes fiction as Suzanne Lilly.

Grandmother and Granddaughter - Audrey Bandini

Comments

Oct 21, 2008 10:07 PM

Alicia Mae Prater :

There is no current method to determine predisposition to disease using someone's genetic information. There are a large number of genes associated with the occurrence of some diseases, but the number of mutations possibly associated with a single disease is great, and most are unknown or unconfirmed, let alone all major diseases. Any prognosis made on genetic information alone is misinformed and likely to be incorrect. I think the worry about this is just hype. The benefit of finding correlations between genetics and disease will aid in treatment.

By the way, the information would be published with anonymity because research is done in a blinded fashion. No one would know which sequence belongs to who unless they have access to the researchers' consent forms and the other database assigning numbers to the medical history. That's standard protocol.