Privacy policies around the world shudder: openness philosophy emerges

At the vanguard of patient openness is PatientsLikeMe. In their privacy policy they link to their “Openness Philosophy“, which reads:

“Most healthcare websites have a Privacy Policy. Naturally, we do too. But at PatientsLikeMe, we’re more excited about our Openness Philosophy. You see, we believe sharing your healthcare experiences and outcomes is good. Why? Because when patients share real-world data, collaboration on a global scale becomes possible. New treatments become possible. Most importantly, change becomes possible. At PatientsLikeMe, we are passionate about bringing people together for a greater purpose: speeding up the pace of research and fixing a broken healthcare system.”

It goes on:
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Best Sentence I Read Today on “Onlineness”

“Controlling your life online isn’t about a set of guidelines for everyone to follow. It’s about being aware of where you might be giving up control and making conscious decisions.”

This is taken from an excellent meditation by Vanessa Fox on living life online (she tagged the post “onlineness” which I had to look at a couple times to find the root word).

One topic she touched on briefly is how a person’s online activity can reach beyond the individual and touch the lives of others. What is acceptable practice in these circumstances? People disagree. Here is a clip:

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Nom de Ome: A pseudonym for your genome

How common will genomic pseudonyms be in 25 years? When might a person choose to use a Nom de Ome?

In some sense, the Human Genome Project’s human genome reference sequence has a nom de ome (which is “human genome reference sequence”). This sequence was generated mostly from a tissue sample donated by an anonymous male from Buffalo, NY. This volunteer was likely solicited from a newspaper article that ran in the Buffalo News on March 23, 1997. Here are the opening words from that article:

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Can a personal genome sequence get a creative commons license?

The short answer is no. There is a long essay waiting to be written here. But for now, I can say that the reason it will not work is because there is no clear legal foundation to build a license on top of when it comes to sequence data. Creative Commons licenses have copyright to build on. Material Transfer Agreements (MTAs) have good old fashioned property law to build on (turns out important things still exist outside of the bitsphere). A personal genome sequence is, well, just bits. (Update: Or lifebits? I love the term)

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Medical Ethics 2.0

As powerful web technologies are applied to the practice of medicine the relationships between patients, health care providers, and scientific researchers will be reconfigured in new and interesting ways. Watching the early stages of this transformation has made me in recent weeks begin to reflect more on how this reconfiguration is going to impact medical ethics. I’ve come to the tentative conclusion that while we are in the very early stages of “medicine 2.0” we are in an even earlier stage of “medical ethics 2.0” and this may have some unforeseen consequences for early adopters of these new web technologies.

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Today House Considers Genetic Information Nondiscrimination Act (GINA)

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:

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!

See also: GovTrack HR 493 page

Recent post with more info on GINA

Epstein on Genetic Privacy

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


Bush calls for genetic privacy

From the NYT:

“If a person is willing to share his or her genetic information, it is important
that that information not be exploited in improper ways,” Mr. Bush said at the
Institutes of Health
. “And Congress can pass good legislation to prevent
that from happening.” He added, “We want medical research to go forward without
an individual fearing personal discrimination.”

The recent issue of Duke’s GenomeLIFE magazine provides more background on the history and potential future of genetic non-discrimination legislation:

GINA is the Genetic Information Nondiscrimination Act, a bill that would ban
genetic discrimination for the purposes of employment or insurance.
Specifically, it would prevent health insurers and employers from using genetic
information to determine eligibility for insurance, set premiums, or hire and fire

But genetic nondiscrimination legislation has been introduced in every
Congressional session since 1995, each time without becoming law. So with the
newly sworn-in 110th U.S. Congress now in session, and with the Democrats
having reclaimed control of both the Senate and the House of Representatives,
at least for the moment, are GINA’s fortunes about to change? And if so, what
would it mean?

As the article points out, the roadblocks facing genetic non-discrimination have not come from the executive branch or the Senate for that matter, but from the House.  Susan Haga, from Duke points out:

Three committees in the House have to look at it and give it their okay—
that’s part of the challenge. And chambers of commerce and groups representing
human resources [HR] for large employers have in the past worried that the
bill will create a new source of litigation for them.

GINA was re-introduced into the House on January 17th, 2007.  You can follow the progress of the legislation at the Genetic Alliance policy page.

Sheryl G. Stolberg. "President Calls for Genetic Privacy Bill" NYT, Jan 18, 2007.

There Oughtta be a Law:The Fate and Meaning of Genetic Nondiscrimination Legislation. GenomeLIFE, Jan-Feb 2007.

Genetic Alliance policy page on GINA

PGP Volunteers Needed in Boston

George Church’s IRB has been approved for the first recruitment phase of The Personal Genome Project and he is looking for volunteers:

The Personal Genome Project (a collaborative project with researchers from Harvard Medical School and Partner’s Healthcare) is recruiting seven individuals to participate in a new approach to Human Genome/Phenome comprehensive data integration including ‘identifying information ‘ such as genome sequencing and facial features. The PGP is also championing a new IRB-approved consenting mechanism which frankly discusses the likelihood of disclosure of identifying information in many modern medical research projects and this one in particular. We are seeking a diverse range of volunteers, male and female, from all backgrounds. Our IRB approval restricts us to volunteers with at least a master’s degree in genetics or equivalent. Consent forms will be signed and blood drawn at Partner’s Healthcare Clinical Center in Boston.

If you’ve never heard of The Personal Genome Project (PGP), check out the main page.  I also noticed George has posted a fantastic summary of ways in which anonymity of personal genomic data can be compromised.  This project is designed for individuals who are willing to contribute to the advancement of medical research with their eyes wide open.  For those who see value in making their genomes transparent, George has been careful to make the risks as transparent as possible.  The infovores and health information altruists couldn’t ask for a better leader on this front.
The next task will be to expand the project beyond Boston…Stay tuned.

George Church discusses PGP at TR

George Church does a Q&A about the Personal Genome Project with Technology Review.

Emily Singer, The Personal Genome Project. Technology Review Jan 20 2006.

See the article in the Crimson as well.

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