Research Participation, Risks and Benefits of

2013 ◽  
pp. 1666-1667
Author(s):  
Kristine M. Molina ◽  
Kristine M. Molina ◽  
Heather Honoré Goltz ◽  
Marc A. Kowalkouski ◽  
Stacey L. Hart ◽  
...  
Keyword(s):  
Research Participation ◽  
Risks And Benefits

scholarly journals Perceived Risks and Benefits in IPV and HIV Research: Listening to the Voices of HIV-Positive African American Women

2018 ◽  
Vol 13 (5) ◽  
pp. 511-524 ◽  
Author(s):  
Nicole M. Overstreet ◽  
Mukadder Okuyan ◽  
Celia B. Fisher
Keyword(s):  
African American ◽  
African American Women ◽  
Partner Violence ◽  
Empirical Studies ◽  
Research Participation ◽  
Research Experience ◽  
Perceived Risks ◽  
American Women ◽  
Risks And Benefits ◽  
Women Living With Hiv

African American women living with HIV were asked to reflect on the perceived risks and benefits of research participation after completing a study examining socially sensitive issues in their lives, including intimate partner violence (IPV) and HIV. Administration of standardized quantitative instruments yielded positive responses to the research experience. However, qualitative assessments of perceived risks and benefits revealed more nuanced responses. For example, confidentiality concerns were more prominent in open-ended responses as was participants’ positive attitudes toward monetary compensation. In addition, some women reported that study participation provided them with new insights about their experiences with IPV. Findings suggest that empirical studies on research protections involving potentially distressing and socially sensitive experiences with vulnerable populations require both quantitative and qualitative assessments of perceived risks and benefits. We discuss implications of our findings for ethics practices in trauma-related research among populations with multiple social vulnerabilities.

scholarly journals Attitudes towards health research participation: a qualitative study of US Arabs and Chaldeans

2018 ◽  
Vol 36 (3) ◽  
pp. 325-331 ◽  
Author(s):  
Kimberly D Campbell-Voytal ◽  
Kendra L Schwartz ◽  
Hiam Hamade ◽  
Florence J Dallo ◽  
Anne Victoria Neale
Keyword(s):  
Qualitative Study ◽  
Health Research ◽  
Research Participation ◽  
Health Behaviours ◽  
Research Process ◽  
Study Phase ◽  
Personal Factors ◽  
Structured Interviews ◽  
Health Care Environment ◽  
Risks And Benefits

Abstract Background The Arab Muslim and Chaldean Christian American community is unified by language but culturally diverse. Researchers are challenged to engage the Arab/Chaldean community to meet immigrant health needs. Arabs/Chaldeans are identified as white in clinical data sets making it difficult to identify health behaviours and patterns unique to the community. Objectives To explore the views of members of the Arab/Chaldean community, including researchers and the lay public, regarding health research participation and the role of clinicians, researchers and community leaders in the research process. Methods A qualitative study of Arab and Chaldean adults and researchers conducted in a US community with a large Arab/Chaldean population. Five semi-structured focus group discussions were triangulated with five in-depth semi-structured interviews with Arab or Chaldean primary care researchers. Responses were audio-recorded and transcribed verbatim. Transcripts were coded and thematically analysed, and findings confirmed with community representatives. Results Three themes were identified: (i) research expectations: risks and benefits; (ii) health care environment: clinicians as recruiters and (iii) research participations: risks and benefits. Themes captured concerns with social relationships, reputation or trust and the cost and benefit of research participation. In the Arab/Chaldean community, institutional and political fears and distrust are amplified. Respect for physicians, teachers and faith leaders connected with or recruiting for studies enhances likelihood of research participation. Conclusion Clinical researchers should address the cultural and immigration histories of Arab/Chaldean research participants. Studies that maximize trust will minimize participation bias and lay the groundwork for improved health. Institutional, sociocultural and personal factors require a pre-study phase to engage and educate participants.

Perceptions of HIV Research Participation Among Gay, Bisexual, and Other Men who Have Sex with Men and Transgender and Nonbinary Adults: Results From a Midwest Pride Event

2021 ◽  
pp. 155626462110627
Author(s):  
Andrea R. Kaniuka ◽  
Meagan Zarwell ◽  
Robert J. Cramer ◽  
Katherine Quinn ◽  
Michelle Broaddus ◽  
...  
Keyword(s):  
Research Participation ◽  
Research Experiences ◽  
Ethical Concerns ◽  
Risks And Benefits ◽  
Participant Selection ◽  
Immunodeficiency Virus ◽  
Hiv Research ◽  
And Gender ◽  
Sex With Men ◽  
Privacy And Confidentiality

Human immunodeficiency virus (HIV) continues to disproportionately affect gay, bisexual, and other men who have sex with men (GBM) and transgender and nonbinary (trans/NB) individuals. This study investigated attitudes toward participation in HIV survey research, guided by Emanuel's framework for ethical clinical research (e.g., risk–benefit ratio, fair participant selection, respect for participants, social value, and collaborative partnership). GBM ( n = 294) and trans/NB ( n = 86) persons recruited at a Pride event in Milwaukee completed a survey assessing risks and benefits of participation in, and comfort responding to, sexual health surveys. Participants reported few ethical concerns (e.g., privacy and confidentiality), with notable differences by race, sexual orientation and gender identity, and prior research experiences. Implications for HIV research with GBM and trans/NB individuals are discussed.

Commentary 2: Qualitative Research with Vulnerable Persons—How to Ensure that Burdens and Benefits are Proportional and Fairly Distributed

2019 ◽  
Vol 14 (5) ◽  
pp. 479-482
Author(s):  
Astrid Gieselmann ◽  
Simone Agnes Efkemann ◽  
Matthé Scholten
Keyword(s):  
Research Study ◽  
Research Participation ◽  
Social Value ◽  
Involuntary Commitment ◽  
Service Users ◽  
Open Door ◽  
Risks And Benefits ◽  
Common Principle ◽  
The Individual ◽  
Vulnerable Persons

This case commentary investigates whether the risks and benefits of an interview study with persons under involuntary commitment on open-door policies in psychiatry were proportional and fairly distributed. Given that there is little data available on the views of service users on open-door policies, the study had significant social value. Because the individual benefits are limited in studies like this, we recommend that special measures be taken to forestall what has been called the “therapeutic misconception.” The study imposed burdens on individual research participants, as evidenced by the distress that a woman with bipolar disorder experienced during the interview. Risks and burdens must be actively monitored in qualitative studies with persons under involuntary commitment. If the actual burdens are disproportional, interviews must be interrupted and risks must be reassessed. A common principle for the fair distribution of the risks and burdens of research participation says that a research study may be carried out with vulnerable persons only if the research aims cannot be attained by including only persons who are not vulnerable. In the study under discussion, both persons who were still involuntarily committed and persons who were no longer committed were included. This indicates that either the aforementioned principle is not fully satisfied or the validity of the study is somewhat compromised. Judging that the latter option is more likely, we contend that this compromise is ethically defensible.

Timing of HT Found Key To Its Risks and Benefits

2010 ◽  
Vol 43 (12) ◽  
pp. 1-4
Author(s):  
DOUG BRUNK
Keyword(s):  
Risks And Benefits

Research Participation Experiences of Informants of Suicide and Control Cases

Crisis ◽  
2010 ◽  
Vol 31 (5) ◽  
pp. 238-246 ◽  
Author(s):  
Paul W. C. Wong ◽  
Wincy S. C. Chan ◽  
Philip S. L. Beh ◽  
Fiona W. S. Yau ◽  
Paul S. F. Yip ◽  
...  
Keyword(s):  
Ethical Issues ◽  
Research Participation ◽  
Self Report ◽  
Initial Contact ◽  
Psychological Autopsy ◽  
Autopsy Study ◽  
The People ◽  
And Control ◽  
The Impact

Background: Ethical issues have been raised about using the psychological autopsy approach in the study of suicide. The impact on informants of control cases who participated in case-control psychological autopsy studies has not been investigated. Aims: (1) To investigate whether informants of suicide cases recruited by two approaches (coroners’ court and public mortuaries) respond differently to the initial contact by the research team. (2) To explore the reactions, reasons for participation, and comments of both the informants of suicide and control cases to psychological autopsy interviews. (3) To investigate the impact of the interviews on informants of suicide cases about a month after the interviews. Methods: A self-report questionnaire was used for the informants of both suicide and control cases. Telephone follow-up interviews were conducted with the informants of suicide cases. Results: The majority of the informants of suicide cases, regardless of the initial route of contact, as well as the control cases were positive about being approached to take part in the study. A minority of informants of suicide and control cases found the experience of talking about their family member to be more upsetting than expected. The telephone follow-up interviews showed that none of the informants of suicide cases reported being distressed by the psychological autopsy interviews. Limitations: The acceptance rate for our original psychological autopsy study was modest. Conclusions: The findings of this study are useful for future participants and researchers in measuring the potential benefits and risks of participating in similar sensitive research. Psychological autopsy interviews may be utilized as an active engagement approach to reach out to the people bereaved by suicide, especially in places where the postvention work is underdeveloped.

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