The freedom to explore one’s own biology, all the way down to the molecular level, should be among the freedoms we hold dear as individuals. I’m agitated that the censorship of personal biological data is being advocated as a reasonable course of action to reign-in the nascent consumer genomics industry. Self-examination should not require permission from any authority. We should protect the autonomy and integrity of individuals.
For most of human history, the ability of an individual to learn about their own body through self-examination was limited to little more than the five senses: sight, touch, hearing, taste, and smell. Modern technological advances have extended these natural abilities dramatically. Devices allow us now to see details about ourselves that were once low resolution, out-of-sight, or even unimaginable. Keychain widgets can dispense data on blood-alcohol levels. Joggers can monitor fluctuations in heart rate plotted against GPS-gathered data about their path, elevation, and pace. Diabetics can obtain instant glucose readings. Video games can track longitudinal BMI scores. Alarm clocks can monitor REM cycles and promise to wake their owners at a time when they are the most well-rested, the least sluggish, and still able to be on-time for the morning appointment.
The ability of individuals to obtain vast quantities of data about their own biology and environments is a new frontier. Most people are hardly aware the frontier exists at all. Only a handful of explorers have set-off into the deep data wilderness. Individuals who have access to biological data about themselves face certain risks. For example, the data might be cause for confusion or lead to actions that are regrettable. These risks are not unique to biological data. All data have the potential to be dangerous to those who choose to consume it. Restricting access to personal biological data under the premise that “data are dangerous” and people need blanket protection from misunderstandings they may encounter is tantamount to censorship.
The only reason more people are not outraged about this new species of censorship — biocensorship — is because the ability of individuals to obtain vast quantities of cheap data about personal biology and their environments is a new phenomenon. The introduction now of gatekeepers to “protect you” from your personal biological data would go largely unnoticed, at least for a few more years. Regulatory oversight of personalized medicine ain’t all bad. But, we should be careful not to hamstring the biocentury with biocensorship and be sure to protect the freedoms of individuals to examine their molecular selves.
Video Round-up: Esther Dyson on Charlie Rose, Spencer Wells on Colbert, and important video I can’t show you on genetic discrimination
Esther Dyson was interviewed on the Charlie Rose Show this past week. Charlie Rose ends the show by saying to Esther, “I can’t wait to see your genome”. I think this is the first time I’ve ever witnessed this expression being used like this — said with such endearment too! — but I’m sure it won’t be the last. (A google search for this phrase shows zero results at the time this post was written.)
The first twenty minutes of the show are mostly about Esther’s involvement in the Personal Genome Project (PGP) [disclosure: I work for the PGP]. The discussion doesn’t stop at genomes or health; the rest of the show ventures into the future of commercial space travel, the internet, cookie monsters, personalized search, AI and more. Esther never ceases to inform and inspire me, and challenge the way I think. I’m so glad she is among the folks that will be pioneering personal genomics for the rest of us via the PGP. Check it out:
One of the most common concerns I hear about personal genome sequencing is the potential impact it could have on an individual’s health insurance. People are worried that if they get their genome sequenced and it indicates they are at increased risk for certain diseases, this knowledge may cause their health insurance premiums to rise or make them uninsurable.
While the opportunity for personal genome sequencing still lies in the future, there is a debate happening now about whether to institute protections for individuals from health insurers based on our current knowledge about genetic testing and the reasonable certainty that widespread adoption of these technologies in the years ahead is inevitable.
The idea that people might forego needed medical care for fear of discrimination by health insurers has motivated some to propose that we pass legislation that prohibits them from using genetic test results for certain purposes. After all, even though genetic testing may be relatively uncommon today, it is clear that as more and more people choose to peer into their genomes, this issue will soon touch us all.
So, if you are at all interested in the possibility of peering into your own genome, its essential that you understand the debates happening today around health insurance. At some point you will need to decide for yourself whether the benefits that might be gained from being sequenced outweigh any personal risks you may incur, including changes to your health insurance. Between now and then, there are opportunities to influence the debate, and ultimately, the choices that you’ll be able to make.
People who offer solutions to the genetics and health insurance issue, tend to fall into three camps:
- the patient advocates
- the free-market purists
- the ignotarians
I’ll take each in turn below the jump.
Here is Representative Louise Slaughter (D-NY) discussing the importance of GINA on the House floor yesterday:
(If you’re reading via RSS, you might need to go to my site to view the embedded video)
Full proceedings from the Congressional Record, April 25, 2007, ~20 pages (PDF)
Update: GINA passes in the House 420-3, now on to the Senate
The House will consider the Genetic Information Nondiscrimination Act (H.R. 493) today, which happens to also be National DNA Day. This bill aims to prohibit employers and health insurers from discriminating based on genetic information.
Sharon Terry from the Genetic Alliance sent around the following guide for action:
The bill has remarkable support in the House with 224 bipartisan cosponsors and unanimous approval from all three committees of jurisdiction. Moreover, the President has called for this important legislation and the Senate stands poised for a favorable vote on the bill.
Follow these easy steps to make an impact today!
1. Either call the Capitol Switchboard at (202) 224-3121 and provide the operator with your zip code. You will be given the name and phone number of your representative. Or search for your representative here: http://www.geneticalliance.org/ws_display.asp?filter=policy.action
2. Call your representative’s office and say you want him/her to vote for the Genetic Information Nondiscrimination Act (H.R.493).
3. Share the news! Let your friends and family know how easy the process was and encourage them to join in and contact their representatives. Remember, the more people who contact Congress in support of an issue, the more likely Congress will act favorably on that issue.
It is not too late to join the Coalition for Genetic Fairness and celebrate success with us as we move next to the Senate! http://www.geneticfairness.org/registration.html
See also: GovTrack HR 493 page
Not everyone agrees that legally enforced genetic privacy, i.e. GINA (H.R. 493), is a good idea. One of the earliest voices of opposition to genetic privacy was Richard Epstein (dating back to a 1994 paper, see below). At the University of Chicago Law School Faculty Blog, he makes his case against genetic privacy:
The larger point here is that genetic information is in principle no
different from any other kind of information that can be asked about a
given person…Does it really make sense to prohibit the use of genetic information
that might explain why a person has shortness of breath and then allow
the employer to look at medical records that reveal that condition. The
claims of privacy are the same in both cases, and both should be
rejected. Sure, you can keep anything quiet if you don’t want to get a
job, but if you do, then the employer could require the disclosure in
order to allow it to control its costs and to make intelligent
decisions. Do we really want work[er]s with heart conditions to conceal
their risk when a simple reassignment might forestall a catastrophic
If you’re following GINA, Kaiser published a nice summary of the current status of the bill today.
Richard A. Epstein, The Legal Regulation of Genetic Discrimination: Old Responses to New Technology, 74 B.U. L. Rev. 1 (1994)
Genetic Alliance’s policy page on GINA
Developing story from the New York Times:
I.B.M., the world’s largest technology company by revenue, is promising not to use genetic information in hiring or in determining eligibility for its health care or benefits plans. Genetics policy specialists and privacy rights groups say that the I.B.M. pledge to its more than 300,000 employees worldwide appears to be the first such move by a major corporation.
Steve Lohr. "I.B.M. to Put Genetic Data of Workers Off Limits" October 10, 2005
more that will certainly arise in the weeks, months and years ahead –
will promote the kind of discussion around the future importance of
genetic security and privacy that our policy initiative today was
intended to generate."
Update2: Amy Barrett. "IBM’s Smart Stance on Genetic Testing" OCTOBER 11, 2005
Do you agree with the following statement:
"Genetic testing is not a good idea because you might have trouble getting or keeping your insurance."
In a recently published study, nearly 87,000 people were asked this question and 40% agreed. The authors note "[d]espite this concern, people were willing to be tested, and we didn’t see any clear sign that this concern was a large
deterrent to being tested." Interestingly, they found that participants from states with legal protections against genetic discrimination were more concerned about discrimination than residents from states with no legal protections.
Hall, Mark A et al. "Concerns in a primary care population about genetic discrimination by insurers." Genetics in Medicine. 7(5):311-316, May/June 2005. (subscription only)
"Study finds research participants concerned about genetic discrimination" Medical News Today. May 26, 2005.
The British Medical Journal is reporting that there is draft legislation in Germany that some fear will enable genetic testing of job applicants for hereditary diseases. This fear was raised by Spiro Simitis, head of the German National Ethics Council, in a recent der Spiegel article. Attention is focused on one clause in this piece of legislation [as translated by BMJ]:
"genetic examinations at the level of phenotypes will be allowed in as far as they permit an assessment of the [applicant’s] current suitability for a certain type of job."
How big of a net does "current suitability for a certain type of job" cast? Not so big that it includes testing for hereditary diseases, but big enough that it includes testing, say, bus drivers for color blindess, according to one government official.
Jane Burgermeister, "Germany may allow employers to introduce gene tests for job seekers." BMJ October 23, 2004.
German National Ethics Council can be found here.
A press conference will be held in Washington on Thursday to urge the House of Representatives to pass its version of (S.1053) The Genetic Information Nondiscrimination Act (see my posts here and here). This press release indicates there will be three speakers at the press conference: Sharon Terry (CEO of Genetic Alliance), Heidi Williams (mother of two uninsurable children with a genetic disease), and Francis Collins (director of the Natl. Human Genome Research Institute).
"Insurers to be denied genetic test data." Business World (Ireland). March 30 2004.
Insurance companies are to be denied access to clients’ health information obtained by genetic testing, under a provision of the forthcoming Disability Bill. Employers and lending institutions will be similarly barred by the provision, according to the Minister of State at the Department of Justice, Equality and Law Reform, Willie O’Dea…He said that the Bill would therefore ban the use of information from genetic tests in assessing an individual for insurance, employment or a mortgage…The Irish Insurance Federation has its own a voluntary code of practice, under which information on genetic tests is not sought for life assurance policies below the value of E381,000.
"Genetic insurance tests OK: Swiss Assembly." Washington Times. March 18 2004.
The Swiss national assembly passed a measure Thursday allowing insurers to require genetic tests when issuing large life or injury insurance policies. The measure calls for a general ban on required genetic testing, but makes exceptions for life insurance policies worth more than 400,000 Swiss francs ($313,000) or optional injury insurance worth more than 40,000 francs ($31,000)…In issuing the measure, the national assembly asserted genetic information should remain private, but not in cases where privacy makes business impossible…The assembly found denying access to genetic information in the case of extremely expensive insurance polices could make those policies prohibitively expensive or even completely unavailable in Switzerland.