Most of the respondents were White The remaining A large majority of respondents had some form of higher education The large majority The remaining 2. Respondents were also very approving of genetic research in general Question 2 , with A large majority of those who disapproved of their own genetic information being used in research responded as such out of concern for the security of their personal information Results were pooled for clarity of analysis, with The four questions assessing attitudes towards genetic research Questions 1, 2, 3 and 7 were analyzed.
The demographic factors that best explained results for the target questions on attitudes towards genetic research were Age and Marital Status of respondent. Participants who were married, however, were more likely to view genetic research as important for public benefit Odds Ratio: 5. In this survey the majority of the respondents were supportive of genetic research, with a very small minority being unequivocally opposed to such studies, whether broadly or on a personal level.
The respondents who did not approve of their genetic material being used in research were generally opposed based on issues pertaining either to privacy of their personal information or an unwillingness to have extra blood drawn. Very few were opposed on moral grounds, indicating that a large majority of participants who answered negatively about participating in research do not have an underlying disapproval for this type of research.
Previous research done by the U. While this federal survey was over a decade ago, more recent studies also show a persistent fear of adverse effects of utilization of genetic data, which underlies many Americans refusal to participate in genetic research [ 20 ].
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The identification of specific participant concerns may lead to future studies on the possibility of enhanced legislative safeguards on personal medical information when participating in genetic research, and of the effects this type of security may have upon future participation. There have been very few studies which assess the attitudes towards genetic research in the United States, and even fewer on non-selected or hospitalized populations in the Northeast region of the country. This type of research has generally been done on either special populations, such as U. S veterans, or on populations whose demographics do not match our own, such as those from the Vanderbilt University study, which was based out of Nashville, Tennessee [ 23 ].
Studies which have been done in the northeast have concentrated more on ethical questions pertaining to privacy of genetic information, such as that undertaken by researchers at Johns Hopkins University [ 24 ]. Outside of the U. S, several large scale studies, such as those in Scotland [ 18 ], Ireland [ 19 ] Canada [ 25 ], have been undertaken to assess different population attitudes towards genetic research and biobanking; however, differences in legislative, social and demographic factors, make it difficult to extrapolate the results to the Northeastern U.
Divergent from many previous studies was the fact that demographic factors, including race and gender, were not predictors of willingness to participate in genetic research. In this large geographic area, encompassing Queens, Nassau and Suffolk counties, ethnicity of the respondent was not predictive of attitudes toward genetic research. It is interesting that despite the national debate surrounding genetic research, which is highly influenced by religious interest groups, the majority of our respondents did not have any such moral objection; instead, most were not opposed to the research in general, only to its possible personal consequences.
The questionnaire responses indicate that nearly all participants, with the exception of a combined 6. In many other studies done throughout the United States, racial identity is often a strong predictor of willingness to participate in a research study, with minorities being sometimes less willing to participate due to historical abuses of their participation in such research [ 26 ].
However, this was not the case in our study, where belonging to a specific racial category did not prove predictive of approval for, or willingness to participate in, genetic studies. It is likely that our results are reflective of the reality and beliefs of the most recent years, when education programs on clinical trials launched among minority and underserved communities have continued to shed light on the importance of research in general. In such a policy, patients admitted or treated in any of the NSLIJHS hospitals would be automatically enrolled in the BioGene Bank research study unless they sign a waiver stating that they would like to be excluded.
This policy is being utilized increasingly across the country in order to ensure that genetic research programs can continue to enroll subjects and contribute to potentially groundbreaking new studies [ 27 ]. Part of the controversy surrounding genetic research in general is the way in which information is obtained, and our results mirror this, with only Approval of such a method is often relatively low, and is also often misunderstood. Results of such studies are often ambiguous in regards to one another, and often have an element of confusion as to participant understanding of certain consent policies.
One such study, done at Vanderbilt University, shows this confusion, as In the survey, a question about the possibility of receiving back the individual results of the genetic testing was added: The return of individual research results IRRs is another issue that is prevalent in ethical debates surrounding biobanking, and genetic research in general. While some feel that it is a moral obligation on the part of researchers to disclose IRRs to participants, others feel that the focus of such genetic research should be on a population or societal level, and not on an individual level [ 29 ].
Consistent with our results is the fact that in the majority of these studies, participants were very eager to receive IRRs, although the preference as to the content of these IRRs is somewhat disparate. This disparity can be attributed to personal preference, but also to the groups participating in these studies. This group did, however, recognize that there should be an opportunity for parents, and participants, to choose which results should be disclosed to them.
In another study conducted among focus groups across the United States, the great majority of participants would want all genetic results returned to them, while markedly less wanted results on conditions that could not currently be treated [ 29 ]. Overall, results that could not be interpreted or offered little insight into specific conditions were not highly valued.
This study has several limitations: the study sample may not be representative of certain aspects of the national demographic data since the last census; for example, the percentage of respondents of Hispanic ancestry, is 7. Despite these limitations, this is the first study of this kind conducted in the greater New York area, contributing the first results on individual responses to the utility of biobanks as sources of biologic material from the general population.
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