Protecting Our Civil Rights in the Era of Digital Health

As growing technological prowess enables sophisticated discrimination capabilities, our reach for health and economic benefit stands to collide with the ethical core of medicine.


"It is truly the first civil rights act of the 21st century."

The words of Sen. Judd Gregg, Republican of New Hampshire, struck an optimistic note in 2008. After 12 years of struggle, congressional action to protect Americans from genetic discrimination was providing a rare respite in a period of growing partisan rancor.

I never imagined that enactment of the Genetic Information Nondiscrimination Act (GINA) would prove so difficult. When I began work as health advisor to Olympia Snowe, the Republican senator from Maine, five years earlier, the bill had unanimous Senate support. Protecting individuals from discrimination based on one's genetic makeup appeared an unassailable proposition. The fact was, most existing civil rights statutes were based on such immutable characteristics.

Yet GINA became mired in contentious issues, and by the time it was signed into law I faced a multitude of concerns. It was clear that advancing technology was opening a virtual Pandora's Box of new civil rights challenges. At the crux of these was the fact that scientific progress has been enabling increasingly sophisticated discrimination. That could take the form of customized cancer therapy that precisely targets a patient's particular tumor; yet it could also result in an insurer denying health coverage because one is genetically susceptible to develop that same cancer. Science could be set at cross-purposes.

Today's laboratories, data repositories and escalating analytical power make it possible to investigate almost any factor and it's relationship to health -- including one's genetic makeup, medical history, diet, relationship status, behavior and more. Yet when discoveries are made, curse often precedes cure, and even after a preventive or treatment becomes available, economic considerations tend to encourage bias against those at risk. Genetic discrimination was just an early manifestation of such adverse effects. Though health technology-driven bias is less visible than being relegated to the "back of the bus," its impact may be no less significant, and the proliferation of such forms of discrimination could undermine over a half century of progress in civil rights.


Some claimed that GINA was enacted prematurely, as few instances of genetic discrimination had been documented. Yet such new bias could grow as rapidly as the technology on which it is based. A more proactive approach was required. While our growing knowledge of genetic predisposition to disease offered the prospect of better health, it also meant that those who were identified with genetic risk could be denied health coverage and face employment discrimination. A new age of genomic medicine was dawning, spurred forward by early completion of the Human Genome Project. Yet the promise of such medical technology wouldn't be fully realized if few Americans were inclined to participate in research or utilize new genetic tests due to the threat of discrimination.

Those concerns had driven Snowe and Louise Slaughter, the Democratic congresswoman from New York, to mount the first federal effort to prohibit genetic discrimination in 1996. Similar to other civil rights legislation, GINA was not targeted to address every possible manifestation of bias, but focused on the greatest public concerns -- discrimination in employment and health insurance.


Genetic discrimination comprised just one of a number of game-changing technological challenges to civil rights. Confronting these presents new obstacles, and points to the need for a paradigm shift in our approach to prevent such inappropriate bias.

Existing federal antidiscrimination statutes recognize a multitude of "protected classes," including those based upon race, color, national origin, gender, religion, age, martial and familial status, disability, veteran status, and sexual orientation -- and decades of effort has fostered greater equity and opportunity. But it was seldom necessary to control the information on which bias was based. Nor did one need to consider every possible harmful act. The fact is, an individual's membership in a protected class was typically discernable, and victims were often painfully cognizant of the bias they suffered. Both the basis for discrimination and its expression were usually apparent.

Such is certainly not the case for genetic discrimination. Bias may be based on a complex genetic analysis, compared with simpler classifications such as gender. With genetic status invisible to a casual observer, one is less likely to know others who are also at risk. Victims frequently may not know they have been a target for bias -- in many cases only the offender may be aware that discrimination has even taken place. If the action is relatively surreptitious, the hidden nature of the genetic trait means that the results of bias won't be readily visible to a casual observer. That is in stark contrast with other forms of discrimination, such as those based on race or color.

Another distinctive aspect of genetic discrimination is that any defense that a violation was committed at a subconscious level is moot. Offenders must actively seek out genetic data on which to act. So as we discussed the need to enact GINA, I often noted that such discrimination was particularly objectionable as it represented an indisputably deliberate act based on an individual's immutable characteristics.

We knew that if genetic discrimination grew in concert with our rapidly expanding knowledge of genomics, the potential for harm was immense. In a worst case scenario one could envision the development of a genetic underclass -- a possibility both provocatively and dramatically depicted in the 1997 film, Gattaca -- a depiction of a future in which genetic manipulation and selection determine the course of an individual's life.


GINA was finally was enacted following the 2006 elections -- but only after an additional 18 months during which it seemed every provision in the bill had been opened to re-negotiation. One of the most significant issues of contention involved the efforts of some to rigidly confine the bill's protection to the narrow constraints of employment and health insurance. While the legislation specifically banned discrimination in both spheres, GINA also protected individuals from being compelled to take a genetic test and treated such genetic information as medical data -- complete with corresponding restrictions on who could access it. It was argued that such strictures should be eased -- to allow employers in particular to utilize genetic tests and their results for other unspecified uses. Some argued that if useful purposes for genetic information were found that didn't directly involve employment or health insurance discrimination, why couldn't those be permitted?

It was immediately clear that granting employers or insurance firms such open-ended access to genetic data would simply invite consultants and lobbyists to devise new strategies to undermine GINA's specific protections. No less worrisome was the fact that compromising the security of genetic data could help foster new injurious forms of discrimination. Genetic information could be exploited in countless ways outside the spheres of employment and insurance. One could envision a multitude of applications involving behavior alone. Perhaps some might wish to evaluate a potential tenant in part by checking their genetic profile. In the terminology of the film "Gattaca," it could be advantageous to screen out "invalids."


This illustrates two key principles in confronting such technology-based discrimination. The first is that one cannot rely solely on prohibiting harmful acts. For years we discussed, debated, explained, negotiated and cajoled -- trying to assure that genetic information couldn't form the basis for either employment discrimination nor impact an individual's access to, or their cost of health coverage. Yet whenever Congress moves to prohibit harmful acts, that can trigger a seemingly endless game of "Whack a Mole" as one attempts to identify every conceivable loophole that might be used to undermine legislative intent.

One may thus conclude that reliance on explicit prohibitions alone can be insufficient, and that leads to a second principle that is critical to address discrimination involving health information: that access to health data must be restricted to those with a clear justification for its use. In this case, opening genetic data to employers and others could create a race between creative discrimination and congressional response, and given the current efficacy of Congress, the winner in such a contest appears obvious.


Our experience with GINA helped to reveal the tip of an emerging threat -- the use of modern data systems to create new forms of discrimination -- and our concern focused on the use of personal medical data. While genetic data expresses probabilities, other parts of one's medical record reflect established fact -- an individual's diagnoses, the medications one has used, and much more. As a clinical scientist I shared an appreciation for the value of individual medical data in research to improve health, yet recognized that its use could be like a double-edged sword, with tremendous potential for both harm and benefit. Many economic interests sought access to medical data for a wide array of uses -- in marketing, in lending, and a myriad of other applications -- and many such practices are not benign.

In discussions at an international meeting on privacy in August of 2008, I thus proposed a two-pronged strategy in addressing discrimination based upon health data. First, that certain harmful acts must be clearly prohibited and second, that the possession and use of personal medical data should be restricted without an individual's consent. In terms of the latter, the governing principle ought to be 'need to know', not 'want to use'. That would at least limit the manipulation of personal health data in new creative uses that could cause harm...and those were a growing concern.

Presented by

William F. Pewen, PhD, MPH, is a former senior health policy adviser for Senator Olympia Snowe, Republican of Maine.

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