The Experts below are selected from a list of 413238 Experts worldwide ranked by ideXlab platform
Emanuela Taioli - One of the best experts on this subject based on the ideXlab platform.
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beliefs and attitudes towards participating in Genetic Research a population based cross sectional study
BMC Public Health, 2013Co-Authors: Samantha M Kerath, Gila Klein, Marlena Kern, Iuliana Shapira, Jennifer Witthuhn, Nicole Norohna, Myriam Kline, Farisha Baksh, Peter K Gregersen, Emanuela TaioliAbstract:Biobanks have the potential to offer a venue for chronic disease biomarker discovery, which would allow for disease early detection and for identification of carriers of a certain predictor biomarker. To assess the general attitudes towards Genetic Research and participation in biobanks in the Long Island/Queens area of New York, and what factors would predict a positive view of such Research, participants from the NSLIJ hospital system were surveyed. Participants were recruited at six hospital centers in the NSLIJ system during the summers of 2009 and again in 2011 (n = 1,041). Those who opted to participate were given a questionnaire containing 22 questions assessing demographics, lifestyle and attitudes towards Genetic Research. These questions addressed individual participant’s beliefs about the importance of Genetic Research, willingness to participate in Genetic Research themselves, and their views on informed consent issues. Respondents took a generally positive view of Genetic Research in general, as well as their own participation in such Research. Those with reservations were most likely to cite concerns over the privacy of their medical and Genetic information. Those who were married tended to view Genetic Research as important, while those in the younger age group viewed it as less important. Prior blood donation of respondents was found to be a predictor of their approval for Genetic Research. Demographic factors were not found to be predictive of personal willingness to participate in Genetic Research, or of approval for the opt-out approach to consent. While respondents were generally inclined to approve of Genetic Research, and those who disapproved did not do so based on an underlying moral objection to such Research, there is a disconnect between the belief in the importance of Genetic Research and the willingness of individuals to participate themselves. This indicates a continued concern for the ways in which Genetic materials are safeguarded once they are collected. Also indicated was a general lack of understanding about the various consent processes that go along with Genetic Research, which should be addressed further to ensure the successful continuation of biobanks.
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Beliefs and attitudes towards participating in Genetic Research – a population based cross-sectional study
BMC public health, 2013Co-Authors: Samantha M Kerath, Gila Klein, Marlena Kern, Iuliana Shapira, Jennifer Witthuhn, Nicole Norohna, Myriam Kline, Farisha Baksh, Peter K Gregersen, Emanuela TaioliAbstract:Biobanks have the potential to offer a venue for chronic disease biomarker discovery, which would allow for disease early detection and for identification of carriers of a certain predictor biomarker. To assess the general attitudes towards Genetic Research and participation in biobanks in the Long Island/Queens area of New York, and what factors would predict a positive view of such Research, participants from the NSLIJ hospital system were surveyed. Participants were recruited at six hospital centers in the NSLIJ system during the summers of 2009 and again in 2011 (n = 1,041). Those who opted to participate were given a questionnaire containing 22 questions assessing demographics, lifestyle and attitudes towards Genetic Research. These questions addressed individual participant’s beliefs about the importance of Genetic Research, willingness to participate in Genetic Research themselves, and their views on informed consent issues. Respondents took a generally positive view of Genetic Research in general, as well as their own participation in such Research. Those with reservations were most likely to cite concerns over the privacy of their medical and Genetic information. Those who were married tended to view Genetic Research as important, while those in the younger age group viewed it as less important. Prior blood donation of respondents was found to be a predictor of their approval for Genetic Research. Demographic factors were not found to be predictive of personal willingness to participate in Genetic Research, or of approval for the opt-out approach to consent. While respondents were generally inclined to approve of Genetic Research, and those who disapproved did not do so based on an underlying moral objection to such Research, there is a disconnect between the belief in the importance of Genetic Research and the willingness of individuals to participate themselves. This indicates a continued concern for the ways in which Genetic materials are safeguarded once they are collected. Also indicated was a general lack of understanding about the various consent processes that go along with Genetic Research, which should be addressed further to ensure the successful continuation of biobanks.
Laura Weiss Roberts - One of the best experts on this subject based on the ideXlab platform.
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Do human subject safeguards matter to potential participants in psychiatric Genetic Research
Journal of psychiatric research, 2019Co-Authors: Laura Weiss Roberts, Jane Paik Kim, Tenzin Tsungmey, Laura B. DunnAbstract:Abstract Despite longstanding concerns about the adequacy of human Research protections in mental illness investigations, minimal work has focused on the perspectives of key stakeholders regarding these safeguards. This investigation examined the perspectives of potential Research participants regarding safeguards for psychiatric Genetic Research. Individuals with mental illness (n = 71), first-degree family members of individuals with mental illness (n = 54), and individuals with no personal or close family history of mental illness (n = 57) provided responses to items regarding perceptions of: 1) protectiveness of a range of Research safeguards in Genetic Research on mental illness; 2) influence of these safeguards on Research participation decision-making; and 3) importance of these safeguards depending on the nature of the Research (i.e., Genetic vs. non-Genetic mental illness Research; and Genetic Research on mental illness vs. physical illness). Potential Research participants perceived existing safeguard procedures as generally protective. The three groups did not differ in their ratings of protectiveness, with the exception of the safeguard domain of “Informed Consent or Alternative Decision-Making Procedures,” which was viewed as more protective by family members of people with mental illness than by individuals with mental illness or comparison participants. Safeguard procedures were perceived as strongly influential with respect to willingness to enroll in psychiatric Genetic Research. These findings suggest that the presence of safeguards positively influences enrollment decision-making by Research volunteers and indicate that potential psychiatric Genetic Research participants find safeguards to be protective, underscoring the responsibility to implement safeguard practices conscientiously.
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Views of the importance of psychiatric Genetic Research by potential volunteers from stakeholder groups.
Journal of psychiatric research, 2018Co-Authors: Laura Weiss Roberts, Jane Paik Kim, Tenzin Tsungmey, Melinda HantkeAbstract:Abstract Few studies have explored potential volunteers’ attitudes toward Genetic Research. To address this gap in the literature, we developed an empirical project to document views held by individuals who may wish to enroll in Genetic studies involving mental disorders. People living with mental illness, family members of people with mental illness, and community comparison volunteers were queried regarding their views on the importance of Genetic Research generally, in comparison with medical Research, and in relation to 12 health conditions categorized in four types. T-tests and univariate and multivariate analysis of variance were used as appropriate. Participants expressed support for the importance of Genetic Research (mean = 9.43, scale = 1–10) and endorsed Genetic Research more highly compared with non-Genetic medical Research (mean = 9.43 vs. 8.69, P value =
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Receptiveness to participation in Genetic Research: A pilot study comparing views of people with depression, diabetes, or no illness.
Journal of psychiatric research, 2017Co-Authors: Laura Weiss Roberts, Jane Paik KimAbstract:Abstract Background Genetic Research in human health relies on the participation of individuals with or at-risk for different types of diseases, including health conditions that may be stigmatized, such as mental illnesses. This preliminary study examines the differences in attitudes toward participation in Genetic Research among individuals with a psychiatric disorder, individuals with a physical disorder, and individuals with no known illness. Methods Seventy-nine individuals with a history of diabetes or depression, or no known illness, underwent a simulated consent process for a hypothetical Genetic Research study. They were then surveyed about their willingness to participate in the hypothetical study and their attitudes about future and family participation in Genetic Research. Results Participants with and without a history of depression ranked participating in Genetic and medical Research as very important and indicated that they were likely to participate in the hypothetical Genetics study. Expressed willingness to participate was generally stable and consistent with future willingness. Individuals less strongly endorsed willingness to ask family members to participate in Genetic Research. Conclusion Individuals with and without a history of mental illness viewed Genetic and medical Research favorably and expressed willingness to participate in real-time and in the future. Informed consent processes ideally include an exploration of influences upon volunteers' enrollment decisions. Additional empirical study of influences upon Genetic Research participation is important to ensure that volunteers’ rights are respected and that conditions that greatly affect the health of the public are not neglected scientifically.
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Employees' perspectives on ethically important aspects of Genetic Research participation: a pilot study
Comprehensive psychiatry, 2005Co-Authors: Laura Weiss Roberts, Teddy D. Warner, Cynthia M. A. Geppert, Melinda Rogers, Katherine A. Green HammondAbstract:Abstract Purpose Insights from Genetic Research may greatly improve our understanding of physical and mental illnesses and assist in the prevention of disease. Early experience with Genetic information suggests that it may lead to stigma, discrimination, and other psychosocial harms, however, and this may be particularly salient in some settings, such as the workplace. Despite the importance of these issues, little is known about how healthy adults, including workers, perceive and understand ethically important issues in Genetic Research pertaining to physical and mental illness. Method We developed, pilot tested, and administered a written survey and structured interview to 63 healthy working adults in 2 settings. For this paper, we analyzed a subset of items that assessed attitudes toward ethically relevant issues related to participation in Genetic Research on physical and mental illness, such as its perceived importance, its acceptability for various populations, and appropriate motivations for participation. Results Our respondents strongly endorsed the importance of physical and mental illness Genetic Research. They viewed participation as somewhat to very acceptable for all 12 special population groups we asked about, including persons with mental illness. They perceived more positives than negatives in Genetic Research participation, giving neutral responses regarding potential risks. They affirmed many motivations for participation to varying degrees. Men tended to affirm Genetic Research participation importance, acceptability, and motivations more strongly than women. Conclusion Healthy working persons may be willing partners in Genetic Research related to physical and mental illnesses in coming years. This project suggests the feasibility and value of evidence-based ethics inquiry, although further study is necessary. Evidence regarding stakeholders' perspectives on ethically important issues in science may help in the development of Research practices and policy.
Samantha M Kerath - One of the best experts on this subject based on the ideXlab platform.
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beliefs and attitudes towards participating in Genetic Research a population based cross sectional study
BMC Public Health, 2013Co-Authors: Samantha M Kerath, Gila Klein, Marlena Kern, Iuliana Shapira, Jennifer Witthuhn, Nicole Norohna, Myriam Kline, Farisha Baksh, Peter K Gregersen, Emanuela TaioliAbstract:Biobanks have the potential to offer a venue for chronic disease biomarker discovery, which would allow for disease early detection and for identification of carriers of a certain predictor biomarker. To assess the general attitudes towards Genetic Research and participation in biobanks in the Long Island/Queens area of New York, and what factors would predict a positive view of such Research, participants from the NSLIJ hospital system were surveyed. Participants were recruited at six hospital centers in the NSLIJ system during the summers of 2009 and again in 2011 (n = 1,041). Those who opted to participate were given a questionnaire containing 22 questions assessing demographics, lifestyle and attitudes towards Genetic Research. These questions addressed individual participant’s beliefs about the importance of Genetic Research, willingness to participate in Genetic Research themselves, and their views on informed consent issues. Respondents took a generally positive view of Genetic Research in general, as well as their own participation in such Research. Those with reservations were most likely to cite concerns over the privacy of their medical and Genetic information. Those who were married tended to view Genetic Research as important, while those in the younger age group viewed it as less important. Prior blood donation of respondents was found to be a predictor of their approval for Genetic Research. Demographic factors were not found to be predictive of personal willingness to participate in Genetic Research, or of approval for the opt-out approach to consent. While respondents were generally inclined to approve of Genetic Research, and those who disapproved did not do so based on an underlying moral objection to such Research, there is a disconnect between the belief in the importance of Genetic Research and the willingness of individuals to participate themselves. This indicates a continued concern for the ways in which Genetic materials are safeguarded once they are collected. Also indicated was a general lack of understanding about the various consent processes that go along with Genetic Research, which should be addressed further to ensure the successful continuation of biobanks.
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Beliefs and attitudes towards participating in Genetic Research – a population based cross-sectional study
BMC public health, 2013Co-Authors: Samantha M Kerath, Gila Klein, Marlena Kern, Iuliana Shapira, Jennifer Witthuhn, Nicole Norohna, Myriam Kline, Farisha Baksh, Peter K Gregersen, Emanuela TaioliAbstract:Biobanks have the potential to offer a venue for chronic disease biomarker discovery, which would allow for disease early detection and for identification of carriers of a certain predictor biomarker. To assess the general attitudes towards Genetic Research and participation in biobanks in the Long Island/Queens area of New York, and what factors would predict a positive view of such Research, participants from the NSLIJ hospital system were surveyed. Participants were recruited at six hospital centers in the NSLIJ system during the summers of 2009 and again in 2011 (n = 1,041). Those who opted to participate were given a questionnaire containing 22 questions assessing demographics, lifestyle and attitudes towards Genetic Research. These questions addressed individual participant’s beliefs about the importance of Genetic Research, willingness to participate in Genetic Research themselves, and their views on informed consent issues. Respondents took a generally positive view of Genetic Research in general, as well as their own participation in such Research. Those with reservations were most likely to cite concerns over the privacy of their medical and Genetic information. Those who were married tended to view Genetic Research as important, while those in the younger age group viewed it as less important. Prior blood donation of respondents was found to be a predictor of their approval for Genetic Research. Demographic factors were not found to be predictive of personal willingness to participate in Genetic Research, or of approval for the opt-out approach to consent. While respondents were generally inclined to approve of Genetic Research, and those who disapproved did not do so based on an underlying moral objection to such Research, there is a disconnect between the belief in the importance of Genetic Research and the willingness of individuals to participate themselves. This indicates a continued concern for the ways in which Genetic materials are safeguarded once they are collected. Also indicated was a general lack of understanding about the various consent processes that go along with Genetic Research, which should be addressed further to ensure the successful continuation of biobanks.
Jane Paik Kim - One of the best experts on this subject based on the ideXlab platform.
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Do human subject safeguards matter to potential participants in psychiatric Genetic Research
Journal of psychiatric research, 2019Co-Authors: Laura Weiss Roberts, Jane Paik Kim, Tenzin Tsungmey, Laura B. DunnAbstract:Abstract Despite longstanding concerns about the adequacy of human Research protections in mental illness investigations, minimal work has focused on the perspectives of key stakeholders regarding these safeguards. This investigation examined the perspectives of potential Research participants regarding safeguards for psychiatric Genetic Research. Individuals with mental illness (n = 71), first-degree family members of individuals with mental illness (n = 54), and individuals with no personal or close family history of mental illness (n = 57) provided responses to items regarding perceptions of: 1) protectiveness of a range of Research safeguards in Genetic Research on mental illness; 2) influence of these safeguards on Research participation decision-making; and 3) importance of these safeguards depending on the nature of the Research (i.e., Genetic vs. non-Genetic mental illness Research; and Genetic Research on mental illness vs. physical illness). Potential Research participants perceived existing safeguard procedures as generally protective. The three groups did not differ in their ratings of protectiveness, with the exception of the safeguard domain of “Informed Consent or Alternative Decision-Making Procedures,” which was viewed as more protective by family members of people with mental illness than by individuals with mental illness or comparison participants. Safeguard procedures were perceived as strongly influential with respect to willingness to enroll in psychiatric Genetic Research. These findings suggest that the presence of safeguards positively influences enrollment decision-making by Research volunteers and indicate that potential psychiatric Genetic Research participants find safeguards to be protective, underscoring the responsibility to implement safeguard practices conscientiously.
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Views of the importance of psychiatric Genetic Research by potential volunteers from stakeholder groups.
Journal of psychiatric research, 2018Co-Authors: Laura Weiss Roberts, Jane Paik Kim, Tenzin Tsungmey, Melinda HantkeAbstract:Abstract Few studies have explored potential volunteers’ attitudes toward Genetic Research. To address this gap in the literature, we developed an empirical project to document views held by individuals who may wish to enroll in Genetic studies involving mental disorders. People living with mental illness, family members of people with mental illness, and community comparison volunteers were queried regarding their views on the importance of Genetic Research generally, in comparison with medical Research, and in relation to 12 health conditions categorized in four types. T-tests and univariate and multivariate analysis of variance were used as appropriate. Participants expressed support for the importance of Genetic Research (mean = 9.43, scale = 1–10) and endorsed Genetic Research more highly compared with non-Genetic medical Research (mean = 9.43 vs. 8.69, P value =
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Receptiveness to participation in Genetic Research: A pilot study comparing views of people with depression, diabetes, or no illness.
Journal of psychiatric research, 2017Co-Authors: Laura Weiss Roberts, Jane Paik KimAbstract:Abstract Background Genetic Research in human health relies on the participation of individuals with or at-risk for different types of diseases, including health conditions that may be stigmatized, such as mental illnesses. This preliminary study examines the differences in attitudes toward participation in Genetic Research among individuals with a psychiatric disorder, individuals with a physical disorder, and individuals with no known illness. Methods Seventy-nine individuals with a history of diabetes or depression, or no known illness, underwent a simulated consent process for a hypothetical Genetic Research study. They were then surveyed about their willingness to participate in the hypothetical study and their attitudes about future and family participation in Genetic Research. Results Participants with and without a history of depression ranked participating in Genetic and medical Research as very important and indicated that they were likely to participate in the hypothetical Genetics study. Expressed willingness to participate was generally stable and consistent with future willingness. Individuals less strongly endorsed willingness to ask family members to participate in Genetic Research. Conclusion Individuals with and without a history of mental illness viewed Genetic and medical Research favorably and expressed willingness to participate in real-time and in the future. Informed consent processes ideally include an exploration of influences upon volunteers' enrollment decisions. Additional empirical study of influences upon Genetic Research participation is important to ensure that volunteers’ rights are respected and that conditions that greatly affect the health of the public are not neglected scientifically.
Peter K Gregersen - One of the best experts on this subject based on the ideXlab platform.
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beliefs and attitudes towards participating in Genetic Research a population based cross sectional study
BMC Public Health, 2013Co-Authors: Samantha M Kerath, Gila Klein, Marlena Kern, Iuliana Shapira, Jennifer Witthuhn, Nicole Norohna, Myriam Kline, Farisha Baksh, Peter K Gregersen, Emanuela TaioliAbstract:Biobanks have the potential to offer a venue for chronic disease biomarker discovery, which would allow for disease early detection and for identification of carriers of a certain predictor biomarker. To assess the general attitudes towards Genetic Research and participation in biobanks in the Long Island/Queens area of New York, and what factors would predict a positive view of such Research, participants from the NSLIJ hospital system were surveyed. Participants were recruited at six hospital centers in the NSLIJ system during the summers of 2009 and again in 2011 (n = 1,041). Those who opted to participate were given a questionnaire containing 22 questions assessing demographics, lifestyle and attitudes towards Genetic Research. These questions addressed individual participant’s beliefs about the importance of Genetic Research, willingness to participate in Genetic Research themselves, and their views on informed consent issues. Respondents took a generally positive view of Genetic Research in general, as well as their own participation in such Research. Those with reservations were most likely to cite concerns over the privacy of their medical and Genetic information. Those who were married tended to view Genetic Research as important, while those in the younger age group viewed it as less important. Prior blood donation of respondents was found to be a predictor of their approval for Genetic Research. Demographic factors were not found to be predictive of personal willingness to participate in Genetic Research, or of approval for the opt-out approach to consent. While respondents were generally inclined to approve of Genetic Research, and those who disapproved did not do so based on an underlying moral objection to such Research, there is a disconnect between the belief in the importance of Genetic Research and the willingness of individuals to participate themselves. This indicates a continued concern for the ways in which Genetic materials are safeguarded once they are collected. Also indicated was a general lack of understanding about the various consent processes that go along with Genetic Research, which should be addressed further to ensure the successful continuation of biobanks.
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Beliefs and attitudes towards participating in Genetic Research – a population based cross-sectional study
BMC public health, 2013Co-Authors: Samantha M Kerath, Gila Klein, Marlena Kern, Iuliana Shapira, Jennifer Witthuhn, Nicole Norohna, Myriam Kline, Farisha Baksh, Peter K Gregersen, Emanuela TaioliAbstract:Biobanks have the potential to offer a venue for chronic disease biomarker discovery, which would allow for disease early detection and for identification of carriers of a certain predictor biomarker. To assess the general attitudes towards Genetic Research and participation in biobanks in the Long Island/Queens area of New York, and what factors would predict a positive view of such Research, participants from the NSLIJ hospital system were surveyed. Participants were recruited at six hospital centers in the NSLIJ system during the summers of 2009 and again in 2011 (n = 1,041). Those who opted to participate were given a questionnaire containing 22 questions assessing demographics, lifestyle and attitudes towards Genetic Research. These questions addressed individual participant’s beliefs about the importance of Genetic Research, willingness to participate in Genetic Research themselves, and their views on informed consent issues. Respondents took a generally positive view of Genetic Research in general, as well as their own participation in such Research. Those with reservations were most likely to cite concerns over the privacy of their medical and Genetic information. Those who were married tended to view Genetic Research as important, while those in the younger age group viewed it as less important. Prior blood donation of respondents was found to be a predictor of their approval for Genetic Research. Demographic factors were not found to be predictive of personal willingness to participate in Genetic Research, or of approval for the opt-out approach to consent. While respondents were generally inclined to approve of Genetic Research, and those who disapproved did not do so based on an underlying moral objection to such Research, there is a disconnect between the belief in the importance of Genetic Research and the willingness of individuals to participate themselves. This indicates a continued concern for the ways in which Genetic materials are safeguarded once they are collected. Also indicated was a general lack of understanding about the various consent processes that go along with Genetic Research, which should be addressed further to ensure the successful continuation of biobanks.
