一本教会你“做对”题的6级阅读书 day9 passage5

Passage 5 Estonian Gene Bank
爱沙尼亚基因库

The devil, as the old saying goes, is in the details.
Or, in the case of the new Estonian law setting up a national genetic data bank,
there is reason for concern that the devil may get involved in
the actual workings of that country's Human Gene Research Act.
The authors of the 34-section act have made a serious effort
to prevent misuse of the data and to protect genetic donors' rights
and privacy. Participation in the project is strictly voluntary,
on the basis of informed consent. It will be illegal to ask anyone
if he or she is participating in the free program.
People won't be paid for providing a tissue sample, medical,
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?