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Putting the gift relationship to test
Published in Erik Malmqvist, Kristin Zeiler, Bodily Exchanges, Bioethics and Border Crossing, 2015
The collection of human research specimens also implies the collection of large quantities of personal and health data, often in dematerialized forms. This has generated increasing unease as to the research community’s capacity to protect the privacy of research participants. This concern has now been magnified by the fact that many tissue samples have been subjected to the potent tools of next generation sequencing and bioinformatics analysis, generating quantities of genomic data that is shared in public databases by scientists world-wide. Indeed, genomics researchers share an unprecedented amount of data, as illustrated by the creation, in June 2013, of a Global Alliance assembling more than 150 research institutions world-wide for the responsible sharing of genomic and clinical data.
Research Methods with Disabled Populations
Published in Francis K. O. Yuen, Carol B. Cohen, Kristine Tower, Disability and Social Work Education, 2013
Elizabeth Eckhardt, Jeane Anastas
Three basic principles underlie all ethical standards for the conduct of research with human being: beneficence, justice and respect. Beneficence means that neither individuals nor the population being studied should be harmed by participation in the research. Justice means that the rights of participants are respected. Respect means that the dignity and self-determination of research participants is safeguarded. Adhering to these principles means, for example, that research participants must give free and informed consent to involvement in research and that there must be no coercion, even undue inducement, or loss of services as a result of refusal to take part in a study. Because of these principles, respecting the privacy of research participants, including their right not to be identified as research participants, must also be a major goal. Unfortunately, history shows that people with disabilities, such as those who lived in institutions for the mentally retarded, have not always had these rights respected. When a group is conscious of a history of abuse in the name of research, it can understandably lead a collective to mistrust of research activities even in this era of systematic oversight of research via institutional review boards, which may be true in some disabled populations.
The Relations between Narrative Identity and Personality Pathology among Clinical Adolescents: Findings from a Multi-Ethnic Asian Sample
Published in Journal of Personality Assessment, 2023
Amy Y. See, Theo A. Klimstra, Rebecca L. Shiner, Mythily Subramaniam, Say How Ong, Jaap J. A. Denissen
Participants were recruited at the child outpatient clinic in IMH between November 2018 and February 2019 through referral from the institute’s clinicians. The questionnaires and narrative task required considerable insight, and Primary 6 (12 years old) English reading level and the ability to retrospect is required. Therefore, research assistants consulted doctors or nurses to inquire about potential intellectual disability among potential participants. These assessments were based on IQ tests that were conducted by trained professionals either during or prior to their intake assessments. The study was explained, and written informed consent was obtained from all adolescents and one of their parents. The research assistants ensured that the participants completed the questionnaires independently. Participants were reimbursed 15 Singapore dollars (approximately 11 US dollars) on completion of the questionnaire. The study was approved by the local National Healthcare Group Domain Specific Review Board in Singapore and the researchers’ local institutional review board in The Netherlands. The data that support the findings of this study are available on request from the corresponding author, Theo A. Klimstra. The data are not publicly available due to the turning point narratives possibly containing information that could compromise the privacy of research participants. We decided to not make quantified data available, because the sample is small and particular combinations of variables (e.g., based on gender and ethnicity) having very low frequencies, which also potentially compromises participant’s privacy.
Toward a Framework for Assessing Privacy Risks in Multi-Omic Research and Databases
Published in The American Journal of Bioethics, 2021
Charles Dupras, Eline M. Bunnik
Over the past decades, special attention has been given to the risks for privacy of collecting, sharing and processing genomic data for medical and research purposes (Rothstein 1997; Laurie 2002; Oliver et al. 2012; Ayday et al. 2013; Erlich and Narayanan 2014; Clayton et al. 2019). When genomic analyses are conducted in research settings, special measures are usually put in place to protect the privacy of research participants or biobank donors: for instance, re-identification risks and potential misuses of individual genomic information are explained to them, and they are asked to provide explicit informed consent to the use of their genomic data for research purposes (Beskow et al. 2001; Caulfield et al. 2008). Research ethics review committees or data access committees may also hold genomic research to higher standards of data security than non-genomic research. Members of the American Health Information Community (AHIC) argued, based on the uniqueness of DNA, the immutable nature of DNA through a patient’s lifetime, the potential impact of genomic information on families, and the historical misuse of genomic information (p.52), that particular privacy protection policies and governance mechanisms are required for genomics (see Garrison et al. 2019).
Longer Term Impact of Bystander Training to Reduce Violence Acceptance and Sexism
Published in Journal of School Violence, 2020
Ann L. Coker, Heather M. Bush, Candace J. Brancato, Zhengyan Huang, Emily R. Clear, Diane R. Follingstad
In Life’s Snapshot, administrators of the same 26 high schools were asked to continue participation in this cohort. Twenty-four of the 26 high schools across Kentucky signed a Memoranda of Understanding, where investigators agreed to allow researchers to conduct participant recruitment and surveys for this cohort study (12 interventions, and 12 control schools). Prior to conducting surveys, letters were sent to parents of all seniors describing the ‘Life’s Snapshot’ study, and provided information for parents to opt their student out of participation. At survey administration, elements of consent were read to students. Students were asked to check a box that indicated their decision to participate, or opt out of the survey. Consenting students were mailed a 10 USD monetary incentive check. During the fall of 2013, 2014, and 2015, three waves of rising seniors were recruited into this longitudinal cohort study. Personal identifying data was not included in analytic files. The Institutional Review Board at the University of Kentucky (13-0012-F6A) approved this protocol. To protect the privacy of research participants who were asked sensitive questions about violence and substance use, researchers received a Certificate of Confidentiality from National Institutes of Health, and National Institute of Child Health and Human Development for this project. This certificate prohibited the release of research information to anyone outside the research team. All data were identified after final data collection.