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Point of View : Apr 1, 2010 (Vol. 30, No. 7)

Cracking Open Genetic Privacy

Common Good Is Best Served by Not Building Walls Around This Deeply Personal Information
  • Margaret R. McLean, Ph.D.

I am an altruist by nature, so when a letter from my healthcare provider inquired as to my interest in volunteering for a research project my initial thought was, “Why not?”

I had participated in clinical trials before—no worries. What did they want? My spit. Why? To sequence my DNA and search for associations between my particular genetic alphabet and my health and lifestyle.

Important questions began to formulate in my mind. For instance, despite assurances to the contrary, could my genes haunt me in the form of higher life- or health-insurance premiums or could I slip into the ranks of the uninsured? Since my employer pays for my health plan, what right would human resources have to my genetic profile? And, perhaps my biggest worry: would data about “what makes me me” be vulnerable to hackers, creating the possibility of molecular identify theft? I shredded the invitation.

Did I make a wise decision or did I fall prey to some irrational fear of losing my identity, my privacy? And, would my loss of genetic privacy necessarily have had undesirable or harmful consequences?

Almost a decade after the Human Genome Project cracked the genetic code, the wall of privacy surrounding genetic information may be developing a few cracks of its own. This is not such a bad thing, perhaps, as it forces us to confront important questions about what constitutes privacy, its value, and whether robust protection of genetic privacy is a promise that cannot—maybe ought not—be kept. Traditional notions of the privacy of medical information are profoundly challenged by genetic tests that reveal things not only about individuals but also about families, something that a family member may or may not already know.

Privacy—the expectation that access to certain information is limited—appears to be ethically neutral, merely describing a person’s anticipated ability to control access to personal information. When I affix my signature to a document, knowingly giving my employer access to my medical records, there is no ethical breach.

Privacy gains ethical valence when expectations of control and limits are violated. Even a deeper ethical violation occurs when bootlegged information is used in harmful ways. Concern for this latter abuse powered the passage of the Genetic Information Nondiscrimination Act of 2008 (GINA), which takes full effect in May of this year.

GINA

GINA prohibits discrimination on the basis of genetic information (including both family history and genetic test results) in health insurance coverage and employment, creating tighter restrictions on the collection and use of genetic data than those in place for other types of medical information. Health insurers cannot request or require genetic information as a condition of coverage or use it to determine rates or to discover preexisting conditions.

Employers cannot hire, fire, promote, or alter terms of employment based on a person’s genetic profile. GINA does not protect privacy per se but protects our interest in insurability and employment by restricting what sorts of decisions can be made on the basis of genetic data. It protects us from harmful discrimination. GINA explicitly exempts life insurance, disability insurance, and long-term care insurance from such restriction.

GINA considers privacy not so much as an abstract principle, but as a contextualized, lived reality, i.e., genetic information is information of a different sort and ethically warrants a different set of limits. Privacy functions differently in different contexts and should be governed by the values and norms of the context at hand. Healthcare relies on access to information—deeply personal information—to effect successful research and treatment. Protecting privacy in the medical context is not tantamount to building a firewall but involves assuring informed consent, managing expectations, and protecting trust.

Medical Ethics

Medical ethics has traditionally relied on four basic principles—to do good, to avoid harm, to respect patient autonomy, and to play fairly. Privacy bolsters these standards by creating an atmosphere of trust in which expectations are met and interests are protected.

Individual wellbeing must not be walled off from the good of the community. The more quickly information about genetic traits and disease associated genes can be gathered, the more quickly will genetic medicine’s promise be realized.

The Personal Genome Project (PGP) at Harvard Medical School is betting that, by making individual genomes and traits—physical, medical, and environmental—publicly available medical research will be thrown into overdrive by fostering quick, reliable associations between genotype and phenotype and environment.

The PGP hopes to attract 100,000 people whose genomic data will assist in the identification of genetic variants associated with common complex diseases such as cardiac disease and breast cancer. Thus far, 10 brave souls have their medical histories and genetic profiles posted on PGP’s insecure website in the interest of a greater understanding of the role of genetic information in human health—ethically speaking, in the interest of the common good.

Reaching ethical conclusions about genetic privacy is challenging for two reasons: First, it is inherently difficult to understand the subtleties of genetics and genetic interactions. Second, it is complicated to accurately predict  the implications and consequences—short- and long-term, intended and unintended—of amassing volumes of genetic data in pursuit of a better understanding of disease or the development of individually tailored pharmaceuticals. The following questions may help our thinking about these complexities.

  • What benefits and what harms can come to both individuals and communities from unfettered access to genetic information? From restricted access?
  • What expectations and interests do stakeholders—especially patients—have with regard to genetic information? What claims about privacy can stakeholders make?  Do some have stronger claims than others?
  • How does the common good modulate our current notions of individual choice and privacy concerning genetic information?

I imagine that humans have always been aware of genetics and family history—brothers and sisters resemble each other, blue eyes “run in the family,” breast cancer or Huntington disease strike generations with eerie frequency. Much of our genetic information has never truly been private, being reflected in our appearance, behavior, and disease. Unlocking the potential of genetic medicine asks us to create cracks in the wall of medical privacy in the interest of the common good, and to do so in an atmosphere of transparency and reciprocity with sensitivity to the deeply personal nature of the information we share.