The Ethics and Governance of Human Genetic Databases European Perspectives Part 3 pptx

their remarkably high expectations of genetic research. More than 90% of

the respondents agree (or rather agree) to the statement that the develop￾ment of gene technology means that many illnesses can be cured. But the

survey also indicates strong public support for applying these discoveries,

in terms of both diagnosing possible illnesses through genetic testing and

making respective ‘corrections’. Almost 90% of the respondents are in

agreement with the statement that people should be encouraged to be

tested in young adulthood for disorders that develop in middle age or later

in life. Almost as many (80%) also agree that parents have a right to ask

for their child to be tested for genetic disorders that develop in adulthood

and (86%) that genetic information may be used by parents to decide if

children with certain disabling conditions are born. Fewer, but still a

considerable majority (68%), consider that couples who are at risk of

having a child with a serious genetic disorder should be discouraged from

having children of their own. Though these responses might not reflect

people’s own potential behaviour, they indicate a potential for rather

strong social pressure for making use of such preventive measures once

these become more widely available, especially taking into account that

Estonia has only lately abandoned the Soviet pattern of dealing with

disability mainly via exclusion in special institutions rather than giving

support and counselling to parents to cope with the situation.

Similarly one can perceive placing social welfare (public safety) above

personal privacy in the willingness of three quarters of the respondents to

allow the police access to the gene bank during criminal investigations,

which is in contradiction with the current legislation forbidding third

parties any access to the database. This is where the attitudes of the

Estonian public, which are similar to those of other post-Communist

countries, diverge most noticeably from the results of the corresponding

surveys carried out in Western Europe, which indicate high expectations

for genetic research but simultaneously call strongly for caution in each

new step.1

Compared to the support for the potential uses of new applications of

gene technology, the number of people perceiving risks accompanying

the wide use of gene tests and similar technologies is much smaller.

Approximately half the respondents consider justified the prediction

that insurance companies will start to demand gene test results while

determining the level of insurance premiums, as well as that employers

1 Gallup Organization Hungary, Candidate Countries Eurobarometer on Science and Technology,

Cc-Eb 2002.3 (Brussels: European Commission, 2003); European Commission, Special

Eurobarometer 154, ‘Europeans, Science and Technology’ (Brussels: European

Commission, 2001).

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will start to demand gene test results from candidates for certain jobs.

Fewer people (44%) consider that knowing gene information will start to

influence interpersonal relationships; and even fewer (36%) that the

spread of use of gene information will lead to a new type of society

where the population is divided into ‘better’ or ‘worse’ depending on

genetic make-up.

However, the high level of optimism and low level of caution can also

indicate lack of profounder acquaintance with or reflection on the issue

among the general public. As already mentioned, genetic research did not

get too much public attention before the idea of the gene bank. But even

after two years of intensive propagation of the project, in late 2002 just

62% of the Estonian population claimed to have heard about the EGP

and only 7% considered themselves well informed on the issue.

Attitudes towards the EGP

For the majority of respondents who are knowledgeable about the gene

project, its perceived benefits, both personal and those for the whole

society, seem to outweigh the possible risky consequences. The major

advantages of the EGP are considered to be medical (allowing the crea￾tion of more effective drugs – 95%; helping the development of Estonian

healthcare provisions – 87%); however, its contributions to economic

development (bringing new investments – 78%; lessening the ‘brain

drain’ and creating new jobs – 66%) and international recognition (mak￾ing Estonia better known in the world – 78%; increasing the competitive￾ness of Estonia – 76%) are also considered important. These features of

the gene project correspond remarkably closely to the image created in

the media discourse.2

Similarly to attitudes to genetic research in general, the negative con￾sequences of the EGP are perceived by a lower proportion of the respon￾dents than the benefits outlined above. Around half of the population

considers it possible or rather possible (52%) that the benefits to the

Estonian state and nation will be minimal, that the direct beneficiaries

will be only investors and pharmaceutical companies and that the samples

of the EGP databank will be used in research that includes gene mani￾pulation (56%). A larger number of people (63%) are worried that the

data collected by the EGP may leak and may be used against gene donors,

e.g. by insurance companies or employers.

2

See Piia Tammpuu, ‘Constructing Public Images of New Genetics and Gene Technology:

The Media Discourse on the Estonian Human Genome Project’, Trames 8 (2004),

pp. 192–216.

Estonia 49

An interesting contradiction in the public opinion has to do with the

specific character of the Estonian gene bank, which is the only one which

has granted donors the right to access their own data in the bank or

receive a card ‘containing the genome of each gene donor’.3 According

to the survey, the vast majority of respondents (86%) believe that people

will personally benefit from participating in the project by getting to know

their health risks. Indeed, this seems to constitute one of the major

appeals of the gene-bank project based on voluntary participation.

According to the survey, 83% of potential donors definitely plan to

apply for a personal gene card containing their ‘genetic information’,

whilst only 2% decisively reject it. At the same time, however, this is

perceived also as the main risk: more than three quarters of respondents

consider it very or rather probable (25% and 54% respectively) that many

people will suffer from psychological distress when they are informed of

their health risks by the EGP.

The generally positive attitude of the public towards the EGP corre￾lates with the level of trust towards different persons and institutions as

the most reliable sources of information on the project. Genetic scientists

and the employees of the Estonian Genome Project are trusted by more

than 80% of the population. Trust towards the persons connected to

the project outweighs that towards, for example, the Ethics Committee

supervising the activities of the project (73%) and family doctors (71%) –

the actual contact persons of the potential gene donors – and other

scientists (61%). Especially low trust characterizes the public attitude

towards journalists (20%), although, for the majority, printed media and

television constitute the principal sources of information on the project,

leaving other sources far behind (e.g. family doctor, friends, relatives).

However, all these results have to be considered in the light of a few

other significant findings. Despite generally overwhelmingly positive

evaluation of the project, only 24% of the population who are knowledge￾able about it have decided to take part; more have decided negatively

(40%), while many have not made up their minds (36%). Hardly reflect￾ing the final outcome of the project in terms of actual participation rates,4

these figures reveal rather low actual interest in such issues on the part of

the majority of the population. Moreover, the people who intend to

participate and who are ‘opting out’ do not show significant differences

3 Krista Kruuv, ‘Kas hakata geenidoonoriks?’ [‘Should One Become a Gene Donor?’]

Postimees, 23 October 2002. Krista Kruuv was the Director of the Estonian Genome

Project Foundation.

4 At the end of 2003, when the pilot study (in three counties) had been going on for more

than a year and the nationwide project for a few months, the participation rate was below

10,000, considerably below initial expectations.

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