CiteULike: ladygoat community-studies

Protecting communities in research: current guidelines and limits of extrapolation.

C Weijer — 2005-04-19T14:58:02-00:00

Nat Genet, Vol. 23, No. 3. (November 1999), pp. 275-280.

As genetic research increasingly focuses on communities, there have been calls for extending research protections to them. We critically examine guidelines developed to protect aboriginal communities and consider their applicability to other communities. These guidelines are based on a model of researcher-community partnership and span the phases of a research project, from protocol development to publication. The complete list of 23 protections may apply to those few non-aboriginal communities, such as the Amish, that are highly cohesive. Although some protections may be applicable to less-cohesive communities, such as Ashkenazi Jews, analysis suggests substantial problems in extending these guidelines in toto beyond the aboriginal communities for which they were developed.

CONSENT, COMMODIFICATION AND BENEFIT-SHARING IN GENETIC RESEARCH

Donna Dickenson — 2004-12-28T17:54:49-00:00

Developing World Bioethics, Vol. 4, No. 2., 109.

Community involvement in developing policies for genetic testing: assessing the interests and experiences of individuals affected by genetic conditions.

SE Gollust — 2005-02-14T19:13:01-00:00

Am J Public Health, Vol. 95, No. 1. (January 2005), pp. 35-41.

Because the introduction of genetic testing into clinical medicine and public health creates concerns for the welfare of individuals affected with genetic conditions, those individuals should have a role in policy decisions about testing. Mechanisms for promoting participation range from membership on advisory committees to community dialogues to surveys that provide evidence for supporting practice guidelines.Surveys can assess the attitudes and the experiences of members of an affected group and thus inform discussions about that community's concerns regarding the appropriate use of a genetic test. Results of a survey of individuals affected with inherited dwarfism show how data can be used in policy and clinical-practice contexts.Future research of affected communities' interests should be pursued so that underrepresented voices can be heard.

From genomic advances to public health benefits: the unbearable lightness of being stuck.

I Rudan — 2005-02-14T17:28:16-00:00

Coll Antropol, Vol. 28, No. 2. (December 2004), pp. 483-507.

Genetic determinants of common human diseases are still poorly understood. Due to large investments, many small successes have been made and the research field is rapidly expanding. However, genetic susceptibility variants showing repeatable associations with common diseases are usually of small effect. They are therefore unlikely to individually explain substantial share of disease burden in any community or provide new insights into disease pathogenesis that could lead to development of new drugs effective in considerable portion of the disease cases in a population. Genetic architecture of common diseases is beginning to reveal an incredible diversity of potential genetic causes that act through somewhat limited number of mechanisms with important contribution of environmental interactions. In light of these findings, we present current understanding of genetic architecture of a spectrum of human diseases. We address the encountered problems in susceptibility gene identification, review the success of leading gene identification strategies and discuss current prospects for translating genomic advances into measurable public health benefits.

Community participation and representation in genetic studies: testing the application of fundamental ethical principles.

A Brito — 2005-02-09T16:03:28-00:00

St Thomas Law Rev, Vol. 13, No. 4. (2001), pp. 935-943.

Factors influencing intention to obtain a genetic test for a hereditary disease in an affected group and in the general public.

K Nordin — 2005-02-01T20:02:51-00:00

Prev Med, Vol. 39, No. 6. (December 2004), pp. 1107-1114.

BACKGROUND: To ensure successful implementations of genetic screening in the future, the attitudes of the public are an important factor to consider. The primary aim of this study is to investigate the intention to take a genetic test for an unidentified hereditary disease. A further objective is to assess the predictive values of attitudes, subjective norms, and perceived personal control on the intention to take a genetic test. These aims are investigated in two groups differing in their experience and knowledge of genetic testing. METHOD: A questionnaire was developed according to the Theory of Planned Behavior (TPB) and mailed to a random sample of 1000 persons from the general public and to 330 persons in FAP families. The response rate was 60% and 74%, respectively. RESULTS: The probability of taking a genetic test was high in both groups but significantly higher in the FAP group. The attitudes of the FAP group were significantly more positive when compared to the attitudes of the general public. For the persons in the FAP group, the most significant others in the decision to take a genetic test were their children, whereas spouses proved to be the most important significant others in the general public. The most important predictor of the intention to take a test in both groups was attitude, accounting for 64% of the variance. CONCLUSIONS: The study indicated that most of the individuals in the FAP group and many in the general public intended to take a genetic test. Our findings suggest that living in an affected group and having some kind of experience of a hereditary disease may lead to an even more positive attitude to genetic testing. Using the TPB, attitudes were found to be the strongest predictor of intention to take a genetic test in both groups.

Strategies for consulting with the community: the cases of four large-scale genetic databases.

B Godard — 2005-01-31T19:22:31-00:00

Sci Eng Ethics, Vol. 10, No. 3. (July 2004), pp. 457-477.

Large-scale genetic databases are being developed in several countries around the world. However, these databases depend on public participation and acquiescence. In the past, information campaigns have been waged and little attention has been paid to dialogue. Nowadays, it is important to include the public in the development of scientific research and to encourage a free, open and useful dialogue among those involved. This paper is a review of community consultation strategies as part of four proposed large-scale genetic databases in Iceland, Estonia, United Kingdom and Quebec. The Iceland Health Sector Database and Estonian Genome Project have followed a "communication approach" in order to address public concerns, whereas, UK Biobank and Quebec CARTaGENE have chosen a "partnership approach" to involve the public in decision-making processes. Following a comparison of community consultation strategies, the main concerns of the public are examined as well as the challenges of involving communities. Importantly, reported across all groups is the concern for confidentiality, respect of the individual, transparency, and the donor's right to access to their own result. However, even if researchers demonstrate a willingness to respect values such as fair representation, transparency and accountability, there is still a risk that the public will mistrust researchers and simply will not participate in sufficient numbers. Complications may arise when individual and community interests conflicts. The implementation of a partnership approach is definitely involving and costly; however, if used properly, this method can improve both participation and so database development.