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Who Gives a Damn about Privacy?

October 23, 2008
by James Feldbaum
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No one can argue that concerns about security and privacy constitute a huge hurdle to the implementation of a Personal Health Record. Despite creating more and more safeguards we have yet to reassure consumers that their medical histories are safe from prying eyes.

Now, a new project can change the way we think about personal privacy forever. The Personal Genome Project, affectionately called PGP, is in the process of obtaining and releasing the private medical records and DNA profile for 100,000 people.

Imagine, having your comprehensive personal medical and lifestyle history out there for all to see. The goal is to create a database that contains integrated gene, environment and trait data that will be easily searchable for future researchers in the area of genetics and genetic research in order to advance our understanding of genetic and environmental contributions to human traits and to improve our ability to diagnose, treat, and prevent illness.

This open-format a database will be administered by the HarvardMedicalSchool, MIT, Partners Healthcare and the University of California in San Diego. Once informed consent is obtained and a vetting process completed, a volunteer will receive a series of questionnaires which touch on all areas of personal behavior including medical histories, physical traits, ancestry, lifestyle choices, environmental exposure and criminal history. The goal is to list extreme details -- anything and everything that may or may not be associated with a genetic tie. Volunteers will need to update their information over time including such intimate details as a midlife crisis in order to determine if there is a genetic predisposition.

The project has been explained as “offering scientific discovery and self curiosity as the driver for participation.” It is described as “a new frontier, one which will spark a revolution in medicine and the way genetic information relates toward global consciousness regarding humanity.”

The project offers significant warnings which might deter most of us from volunteering. Chief among them is the misuse of our personal health record to affect employment or insurability or to reveal the propensity for a disease for which there is no current effective treatment. Imagine, having your genetic information and intimate details of your life searchable and downloadable.

Mission

The mission of the Personal Genome Project is to encourage the development of personal genomics technology and practices that:

  • are effective, informative, and responsible
  • yield identifiable and improvable benefits at manageable levels of risk
  • are broadly available for the good of the general public

To achieve this mission we will build a framework for prototyping and evaluating personal genomics technology and practices at increasing scales. In support of this goal, we will:

  • develop a broad vision for how personal genomes may be used to improve the understanding and management of human health and disease
  • provide educational and informational resources for improving general understanding of personal genomics and its potential
  • recruit individuals interested in obtaining and openly sharing their genome sequences, related health and physical information, and reporting their experiences as a participant of the project on an ongoing basis
  • develop technologies to improve the accessibility of personal genome sequencing
  • foster dialog with research communities, industries, and public and governmental bodies with interests in personal genomics, and related ethical, legal, and social issues (ELSI)
  • develop tools for interpreting genomic information and correlating it with related personal medical and biological information

We believe our mission is best served by soliciting input and promoting openness and collaboration from the very start to ensure that the different threads of personal genomics are all individually addressed and reinforce each other as they come together. Toward this end, we seek the involvement of individuals from research communities, industry, public bodies, and other stakeholders interested in contributing to our mission.

Already, over 5000 people have volunteered. Here is the project link if you care to volunteer:

http://www.personalgenomes.org/register.html

Here are a few interesting links from prominent newspapers:

Taking a Peek at the Experts’ Genetic Secrets – New York Times:

http://www.nytimes.com/2008/10/20/us/20gene.html

Personal genome project participants get first look at their DNA – Boston Globe

http://www.boston.com/news/health/blog/2008/10/personal_genome.html

Genome Database Will Link Genes, Traits in Public View – Washington Post

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James Feldbaum

Jim Feldbaum is a physician consultant specializing in clinical transformation, CPOE, and...