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Nature © Macmillan Publishers Ltd 1998
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Justice, also believes that Shitrit’s proposal is too broad. “Our position is that the bill isnot constructed to take into account currentlegislation,” Ben-Or says.
She argues that Israel already has lawsdealing with similar issues, such as patients’rights and medical privacy. Ben-Or says itwould be better to amend these laws to coverthe new questions raised by genetic testing,rather than pass an entirely new law.
She points out, for example, that Israel’snational health law guarantees health insur-ance to all citizens, and therefore there is nofear that an Israeli who has inherited a riskygene would not be able to get health insur-
ance. She also said that there might be someforms of employment, such as high-risk jobsinvolving, for example, exposure to radia-tion, where a person’s genetic predisposi-tions might be a legitimate consideration.
But not everyone agrees. Asa Kasher, whoholds a chair in the professional ethics andphilosophy of practice at the University of Tel Aviv, and is chairman of the NationalResearch and Development Council’s committee of ethics of science and intellec-tual property, also fears that some of the provisions of Shitrit’s bill are too broad. But he accepts that special legislation is necessary. Haim Watzman
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214 NATURE | VOL 394 | 16 JULY 1998
[JERUSALEM] Leading officials in the Israeligovernment are reacting cautiously to a billproposing stringent restrictions on the use ofgenetic information. The bill was passed last week by the Israeli parliament’s sciencecommittee.
It was submitted by Knesset memberMeir Shitrit, based on proposals drawn up by George Annas, professor of public healthat Boston University School of PublicHealth, who has been closely involved insimilar legislation in the United States (seeNature 384, 202; 1996).
The bill would grant individuals consid-erable control over genetic material takenfrom them for either medical tests orresearch purposes, and would forbidemployers and insurance companies fromdiscriminating on the basis of a person’sgenetic profile.
But Bracha Rager, chief scientist at theMinistry of Health, calls Shitrit’s bill “prob-lematic”, arguing that it could prevent doc-tors from performing important medicaltests, and might also act as an obstacle tomedical research.
Shitrit complains that, at present, Israellacks any controls over the way genetic infor-mation is handled. “There is no supervision,no licensing; no one explains to people aboutthe implications of genetic tests, and there isno genetic counselling,” he says.
His original bill contained a sweepingprovision making all genetic material theproperty of the donor, who would have theright to demand that such material bedestroyed at any time he or she chose.
This provision has been removed fromthe version that will go to the full Knesset forits first reading. But other provisions wouldstill grant citizens considerable control overany of their genetic material that is likely tobe obtained by doctors and researchers.
Shitrit argues that such controls are necessary to prevent the genetic informationfrom being misused. But Rager contends thatit is could be detrimental to patients.
For example, she says, someone who hasprovided genetic material to be tested foreither of two genetic markers for a form ofcancer, and who then asked for the material tobe destroyed, could miss out on a vital test if athird marker were subsequently discovered.
Rager agrees with the provision inShitrit’s bill that genetic material donated for research purposes should be anonymous.But she adds that researchers should still bepermitted to know certain basic features ofthe donor, and fears that the proposed lawwill prevent scientists from obtaining eventhese essential data.
Gali Ben-Or, an assistant deputy attor-ney-general who has been working on theissue of genetic property for the Ministry of
Israel split on rights to genetic privacy
Swiss databank to start charging for use[MUNICH] The Swiss-Prot protein sequencedatabank, one of the world’s most widelyused reference sources on proteins, isintroducing a system of licensing for privatecompanies to ensure stable financing andhelp fund an expansion of its activities.Academic researchers will still be able to usethe databank without charge.
Swiss-Prot is a joint enterprise betweenthe newly created Swiss Institute ofBioinformatics and the EuropeanBioinformatics Institute, the Cambridge-based outstation of the European MolecularBiology Laboratory (EMBL).
It is particularly valued by scientistsbecause of the information added to simpletranslations of publicly available nucleotidesequences through the detailed annotationapplied by the database’s staff.
Until now, Swiss-Prot has been fullysupported by public funding, and hasprovided a free service to both industry andacademic researchers. But it hit a majorfunding crisis in 1996 when two majorgrants from the Swiss government were notrenewed (see Nature 381, 266; 1996). It onlymanaged to avert closure through acampaign for interim support, and iscurrently running on support from Swissfunding agencies.
Amos Bairoch, who founded Swiss-Protin 1986, says it resisted buy-out offers fromseveral commercial companies because heand his colleagues were concerned thatcommercial interests might be reluctant tocontinue maintaining open access toacademic researchers.
Instead they are planning to develop amore stable funding strategy under whichSwiss-Prot would receive half of its fundingfrom public sources and half through licencefees from private companies.
Bairoch helped to set up the SwissInstitute of Bioinformatics from fiveGeneva-based bioinformatics research
groups, including those already involved inSwiss-Prot. It is independent of theuniversity system.
As such, it is entitled to receive directfunding from the government withoutdepending on university grant money. Thegovernment has already indicated that itconsiders Swiss-Prot a funding priority.
Bairoch says he also encouraged thecreation last November of an independentGeneva-based company, GeneBio, which, inaddition to its core business of developinghigh-quality specialized protein databases,will handle the administration of Swiss-Prot’s licensing scheme.
Fees will range from US$2,500 for smallstart-up companies to US$90,000 for largecompanies. Pharmaceutical companies areused to paying this level of fee for databases,says Bairoch.
Fotis Kafatos, director-general of EMBL,emphasizes that the decision to imposelicence fees will have no repercussions fornucleotide databases at the EuropeanBioinformatics Institute, which arerepositories of raw data. He points out thatSwiss-Prot licensees will be paying for the“very labour-intensive expert curation”.
The new funding system will allowSwiss-Prot to expand. At present thedatabase includes 73,000 proteins, but anadditional stockpile of 150,000 ‘virtualproteins’ — those whose sequence isdeduced from nucleotide information, buthave not been functionally analysed — arewaiting in the wings to be worked on.
Swiss-Prot staff stress that academicswill continue to be exempt from charges.‘Grey’ academic research areas involvingsmall university-based start-up companiesor industrial collaborators will benegotiated on a case-by-case basis, says Bairoch, adding that Swiss-Prot does not wish to interfere with academicenterprise. Alison Abbott