Passage 5 Estonian Gene Bank
愛(ài)沙尼亞基因庫(kù)
[00:01]The devil, as the old saying goes, is in the details.
[00:06]Or, in the case of the new Estonian law setting up a national genetic data bank,
[00:13]there is reason for concern that the devil may get involved in
[00:18]the actual workings of that country's Human Gene Research Act.
[00:23]The authors of the 34-section act have made a serious effort
[00:28]to prevent misuse of the data and to protect genetic donors' rights
[00:34]and privacy. Participation in the project is strictly voluntary,
[00:41]on the basis of informed consent. It will be illegal to ask anyone
[00:47]if he or she is participating in the free program.
[00:53]People won't be paid for providing a tissue sample, medical,
[00:58]and family history to the Estonian Gene Bank.
[01:02]That information is immediately given "a unique code consisting of
[01:08]at least 16 random characters." Genetic and medical data
[01:15]become and remain the property of the Estonian Gene Bank-except
[01:21]that individual donors have the right, "at any time," to request
[01:26]"destruction of the data which enables decoding."
[01:31]They can also have their sample materials destroyed
[01:35]if their identity has been unlawfully disclosed.
[01:39]Donors are entitled to their own genetic data, at no charge,
[01:46]as are their designated physicians. No one else has lawful access
[01:52]to this information.
[01:54]Indeed, it is unlawful to ask-and the act contains specific paragraphs
[02:01]that forbid employers and insurance companies to gather such information,
[02:07]or to treat "people with different genetic risks" differently as employees
[02:14]or insurance clients. Genetic information may be released to researchers
[02:21]"only in coded form, as a set of data and on the condition that tissue samples
[02:28]or data concerning at least five gene donors are issued at a time."
[02:35]Supporters of the project expect that the Estonian Gene Bank
[02:41]will become a favorite source of information for researchers
[02:46]associated with biotechnology companies that are expected to pay handsomely
[02:52]for access to the decoded (and anonymous) information.
[02:58]Some firms are expected to set up shop in Estonia, presumably in
[03:04]or near the university city of Tartu where most Estonian geneticists live
[03:11]and work. The project is expected to "put Estonia on the map"
[03:18]and lead to an economic bonanza for a newly independent country
[03:24]with few natural resources.
[03:27]Not everybody shares that view. Regardless of the favorable poll results,
[03:34]a number of objections have been published in Estonian-language newspapers.
[03:40]These range from the simplistic "If it's such a great idea,
[03:46]how come the French and Germans aren't doing it already?"
[03:50]to arguments that the start-up money could be spent on better things.
[03:57]Some commentators are also concerned about privacy.
[04:03]Information in the data bank could be used for blackmail
[04:07]and is there a data bank in the world that is truly secure from hackers?
[04:14]And what about leaks?
