Research with groups: Group rights, group consent, and collaborative research

Schrag, Brian

doi:10.1007/s11948-006-0049-0

Cited by 13 publications

(4 citation statements)

References 8 publications

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“…One possibility is to consult community forums to gain consent for research projects, instead of gaining consent from parents only [35,37]. Such group consent procedures can facilitate the process of decision-making, ensuring that the study is understood and supported by the community as well as by individual participants [38]. Significantly, this principle of community consultation already underpinned the Department of Health's prior ethical guidelines.…”

Section: Discussionmentioning

confidence: 99%

Changes to the law on consent in South Africa: implications for school-based adolescent sexual and reproductive health research

Zuch

Mason‐Jones

Mathews

et al. 2012

BMC Int Health Hum Rights

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BackgroundThe National Health Act, No 61, 2003 in South Africa is the first effort made by the government to protect health-related research participants under law. Implemented on March 1, 2012, the law mandates active consent from a parent or legal guardian for all research conducted with research participants under the age of 18 years. This paper focuses on the Act's implications for school-based adolescent sexual and reproductive health research.DiscussionAlthough well intentioned, the added legal protections in the National Health Act may have the unintended consequence of reducing participation rates in school-based adolescent sexual and reproductive health research, thereby excluding the most at-risk students. The Act may also compromise adolescents' right to dignity and privacy, especially considering the personal nature of research on sex and sexuality. Devolved, discretionary decision-making, which empowers local human research ethics committees to permit a wider range of protective measures, including passive consent, independent adolescent consent or community consultation ought to be considered. The continued and direct involvement of young people in their sexual and reproductive health and well-being is an important principle to uphold.SummaryThis paper calls for a re-examination of section 71's ethical guidelines relating to informed consent in the National Health Act, No 61, 2003 in South Africa in order to better serve the interests of South African adolescents in sexual and reproductive health research.

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Section: Discussionmentioning

confidence: 99%

Changes to the law on consent in South Africa: implications for school-based adolescent sexual and reproductive health research

Zuch

Mason‐Jones

Mathews

et al. 2012

BMC Int Health Hum Rights

View full text Add to dashboard Cite

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“…For instance, indigenous tribes earned the right to their groups' livelihood in the Amazon forest through a long and collectively fought battle (Schrag 2006). Himalayan women have pushed to collectively govern the natural resources as part of their conservation movement (Arora 2016a), and herders in Ethiopia earned the right to collectively graze their cattle after much tribal strife (Donovan and Assefa 2003).…”

Section: Shift Focus From the Individual To The Collective Rights Appmentioning

confidence: 99%

General Data Protection Regulation—A Global Standard? Privacy Futures, Digital Activism, and Surveillance Cultures in the Global South

Arora

2019

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This paper asks the question whether current data regulations designed to curb digital surveillance are enabling for Global South activists seeking to create systemic social change in today’s data-driven societies. This text proposes five measures to answer this question and devise a decolonial pathway to improve the human condition, namely: a) Recognize the long legacy of distrust of the law among activists; b) Channel our energies more on local governance and less on (trans)national regulation; c) Shift focus from the individual to the collective rights approach; d) Attend to motivations for publicity over privacy; e) Re-frame activism from grand movements to everyday creative insurgencies. This paper starts with the premise that laws and regulations have deep political interests often rooted in neocolonial ideologies and are not necessarily designed and executed for the protection of all citizens. Laws may evoke different meanings among the world’s marginalized communities, far from the sacrosanct position they hold among many in the West. This work argues for a decolonial approach—to go beyond the data-centric and individual consent framework to genuinely understand the complex relationship between surveillance, privacy, activism, and law at the peripheries in the Global South and to foster dignity for all.

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“…This approach raises the challenging issue of group consent (Schrag 2006). How would she go about getting informed consent from the group?…”

Section: Informed and Voluntary Consentmentioning

confidence: 99%

Piercing the Veil: Ethical Issues in Ethnographic Research

Schrag

2008

Sci Eng Ethics

Self Cite

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It is not unusual for researchers in ethnography (and sometimes Institutional Review Boards) to assume that research of "public" behavior is morally unproblematic. I examine an historical case of ethnographic research and the sustained moral outrage to the research expressed by the subjects of that research. I suggest that the moral outrage was legitimate and articulate some of the ethical issues underlying that outrage. I argue that morally problematic Ethnographic research of public behavior can derive from research practice that includes a tendency to collapse the distinction between harm and moral wrong, a failure to take account of recent work on ethical issues in privacy; failure to appreciate the deception involved in ethnographers' failure to reveal their role as researchers to subjects and finally a failure to appropriately weigh the moral significance of issues of invasion of privacy and inflicted insight in both the research process and subsequent publication of research.

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Research with groups: Group rights, group consent, and collaborative research

Cited by 13 publications

References 8 publications

Changes to the law on consent in South Africa: implications for school-based adolescent sexual and reproductive health research

Changes to the law on consent in South Africa: implications for school-based adolescent sexual and reproductive health research

General Data Protection Regulation—A Global Standard? Privacy Futures, Digital Activism, and Surveillance Cultures in the Global South

Piercing the Veil: Ethical Issues in Ethnographic Research

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