Free Personal Genome Activism goes International

Today GTO pointed to a new website advocating the $0 Genome Project. A WhoIs look-up shows the administrative contact for the various websites associated with this project to be the Korean Bioinformation Center (KOBIC).

The last major bid for a free genome project was made from California in September of 2004 under the banner of the CUVIGS Initiative, or Californians for Universal Voluntary Individual Genome Sequencing.

Without surprise, CUVIGS supporters looked to George Church for feedback (interview still available here). Snip from their news release:

Professor Church believes that the emergence of Californians for Universal Voluntary Individual Genomic Sequencing, which is trying to place an initiative on the California ballot that would provide public funding to increase the availability and lower the unit cost of doing individual genomic sequencing, “sounds like a wonderful initiative, very visionary of California to think of such a thing….If the people spoke out like that, it would be a historic moment.” He added that “it needs to be phased in carefully with lots of oversight.” He also supported competition between Massachusetts and California to see who could pass such an initiative first.

Now, it seems, we can add South Korea to the competition for free personal genomes.

If they were to exist, “free genomes” would be more equivalent to “free kittens” than “free beer” in terms of the responsibility needed. Free beer requires very little commitment, there are virtually no instructions for its proper use and it can just be poured down the sink if it is doesn’t meet expectations. George’s recommendation for careful oversight of any such project, would be essential.

Mexican HapMap Project

Mexico has launched its own genome project:

Mexico has launched a racebased genome project to determine if a genetic basis exists for its growing health crisis. The goal is to glean insights into genetic differences, believed to be unique to its population, that may play a key role in chronic diseases like asthma, diabetes and hypertension.

…The Instituto Nacional de Medicina Genomica (National Genomic Medicine Institute of Mexico, or INMEGEN) will manage the resulting ‘Mexican HapMap’…According to Gerardo Jimenez, director of INMEGEN and the new collaboration, INMEGEN will begin by sampling individuals in six remote regions of Mexico to construct a consensus genetic map that fits the entire Mexican mestizo population, a mixture of Europeans (mainly Spaniards) and Indians. The first objective is to determine if every block of nucleic acid sequence will be alike for all the Mexican groups. “My own prediction,” says Jimenez, “is that we are not going to find huge differences.”

INMEGEN will release newly mined genomic data into the public domain as fast as technology allows, but Jimenez is quick to point out that the measure of the project’s success is not the science, but rather the medicines that come out of it. He also envisions the initiative—the largest genotyping study ever launched in Latin America—having value beyond his country’s borders, informing public health research and drug discovery throughout mestizo countries. To that end, INMEGEN will seek alliances with other Latin American regions in the near future.

Stephen Herrera, Mexico launches bold genome project, Nature Biotechnology. September 2005. (sorry subscribers only) BUT see here!

INMEGEN homepage.

Proposal for Genetic Pawprinting in Vienna

Austrian lawmaker district counselor Manfred Juraczka wants to build a DNA database to fight a growing dog doo menace on the streets of Vienna.  The system would be similar to the Combined DNA Index System (CODIS) in the U.S., except this one is for canines.

German Job Applicants: Genetic Testing in Your Future?

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.

Anonymous. "Gesetzentwurf ermöglicht Gentest für Job-Suchende" der Spiegel. October 9, 2004. [see Babelfish for translation]

World Round-up: Ethical, Legal Aspects of Genetic Testing

United States:
The Third Annual International Bioethics Forum (April 22-23) is titled "Who Knows? Who Should Know? Welcome to the World of Genetic Testing." 

Europe:
A European Commission Expert Group will present their 25 Recommendations on issues relating to genetic testing at a conference in Brussels on May 6th and 7th.

New Zealand:
University of Otago has been promised $2 million, says here, by the New Zealand Law Foundation to coordinate an international research team for studying the legal and ethical implications of genomic technologies.

Genetic Privacy Legislation: U.S and abroad

United States
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).

Ireland
"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.

Switzerland
"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.

EU conference: Genetics Testing Should Not Be Commercialized

At a recent conference and debate on “New genetic applications and access to healthcare”, organized by the European Commission and the Socialist Mutual Health Fund of Belgium, participants “called for increased vigilance against the risk of commercialisation of genetic testing” according to a press report.

Even though the press report is very brief and there are signs of translation difficulties, e.g. “fake positives” rather than the idiom “false positives”, it portrays the general attitude of the conference to be one of extreme skepticism toward genetic testing that is geared toward medical consumers. In response to the agreement by participants, according to the press coverage, that “it is important to legislate to keep genetic testing in the medical realm,” prescribed by “specialized teams” and out of the hands of private health insurance companies, “[r]epresentatives from the insurance sector argued that the patient should not be told the results [of genetic testing] either.” Another participant, Rudy Demotte, the Belgian Minister for Social Affairs and Public Health, insisted that, according to the press report, “progress in genetics is very slow, and that it is in prevention that genetics becomes very important. He also pointed out that it is not in the interest of anyone to make genetic testing commercially available as this would create the risk of misinformation.” Are there not any knowledgeable medical consumers in Europe? There is no question that potentially thorny issues surround genetic testing, but there must be more creative solutions than simply prohibiting or severely limiting the ability of medical consumers to learn about their own biology.

Canadian Public Opinions on Genetic Privacy Issues

"Public Opinion Research Into Genetic Privacy Issues" Prepared for the Biotechnology Assistant Deputy Minister Coordinating Committee, Government of Canada, by Pollara Research and Earnscliffe Research and Communications.  Final Report issued in March 2003. (Summary in HTML or report in PDF)

Issues examined:

• general familiarity and awareness of genetic information and privacy issues;
• willingness to undergo, and experience with genetic testing;
• perceptions of the current and preferred governance models for privacy in connection with personal genetic information;
• the role of research and potential privacy constraints on its use of genetic information; and
• the degree to which insurance companies should have access to existing genetic information.

Authors describe the following three "general impressions" from the survey:

(1) Canadians have not yet engaged in any profound way in thinking about the privacy implications in the coming revolution in personal genetic information.
(2) Genetic information is generally seen in the same light as health information though many believe it to be more fundamentally personal with more worrying implications for abuse.
(3) On the whole, most people believe there are more benefits from knowing more about our genetic information than drawbacks.

Here are some of the more interesting snippets from the research article [Ed. note: This condensation is for the time-harried individuals.  I recommend reading the whole document -- only 14 pages -- in order to get more background from the authors about the stats]:

• [F]ewer than one in ten saying they were “very familiar” with the subject matter…This is one of those rare subjects in public opinion research where people truly underestimate their level of familiarity with an issue.
• 95% said they would undergo genetic testing if it would determine the best medical approach to dealing with a disease or condition they had.
• 89% said they would agree to testing to determine if there was an inherited disease they might pass on to their children.
• 58% said they would undergo testing simply to obtain more information about their own genetic characteristics.
• Almost 90% disagree with the proposition that they might not test themselves or their children because there is something “morally wrong” with genetic testing.
• Almost 80% believe government should have the right to prevent the use of genetic testing if it deems the tests’ purpose to be unethical.
• 37% would favor a ban home genetic testing kits [Ed.: Perhaps the most interesting stat of the bunch.  The brashness of such a large swath is a bit worrisome].
• 92% of Canadians agree with the proposition that it should be each person’s right to determine whether or not they have a genetic test.
• 91% do not believe that insurance companies should have the right to access existing personal genetic information. The level of opposition has increased since the question was first asked three years ago (86%.)
• 90% said employers should not have access to genetic information of applicants or employees.
• Concern about the confidentiality of personal information is high – particularly when it comes to financial (75% express some level concern) and medical (60%) information. Concern is far less prevalent about personal genetic information (47%)
• There is strong evidence from the research that an increase in knowledge about the area and discussion about it increase the conviction that the benefits of facilitating access to genetic information outweigh the drawbacks. At the end of the survey instrument – after almost 30 minutes of questioning about the issues – the question of benefits versus drawbacks was posed once again. The assessment that benefits of knowing more about our genetic information outdrew drawbacks grew from 63% to 77%.

Much of what I know about the current issues surrounding genetic privacy was gleaned from the excellent collection of papers in the book Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era (Yale UP: 1997). 

More on International Standards for Genetic Data

I blogged last week that UNESCO was set to release their International Declaration on Human Genetic Data, and they have

GenomeWeb reports on the declaration here.

Relevant excerpts from the declaration:

…It is ethically imperative that human genetic data
and human proteomic data be collected, processed, used and stored on
the basis of transparent and ethically acceptable procedures…

…Human genetic data, human proteomic data and biological samples
linked to an identifiable person should not be disclosed or made
accessible to third parties, in particular, employers, insurance
companies, educational institutions and the family, except for an
important public interest reason in cases restrictively provided for by
domestic law that is consistent with the international law of human
rights or where the prior, free, informed and express consent of the
person concerned has been obtained provided that such consent is in
accordance with domestic law and the international law of human rights.
The privacy of an individual participating in a study using human
genetic data, proteomic data or biological samples should be protected
and the data should be treated as confidential…

…Human genetic data, human proteomic data and the biological
samples collected for one of the purposes set out in Article 5 should
not be used for a different purpose that is incompatible with the
original consent, unless the prior, free, informed and express consent
of the person concerned is obtained according to the provisions of
Article 8(a) or unless the proposed use, decided by domestic law,
corresponds to an important public interest reason and is consistent
with the international law of human rights. If the person concerned
lacks the capacity to consent, the provisions of Article 8(b) and (c)
should apply mutatis mutandis…

…States should regulate, in accordance with their domestic law and
international agreements, the cross-border flow of human genetic data,
human proteomic data and biological samples, so as to foster
international medical and scientific cooperation and ensure fair access
to this data. Such a system should seek to ensure that the receiving
party provides adequate protection in accordance with the principles
set out in this Declaration…

International Standards for Genetic Data

UNESCO’s International Bioethics Commission (IBC) will be making a declaration about international standards for the collection, processing, storage, and use of genetic data.

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