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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

San people of Africa draft code of ethics for researchers – Science (Linda Nordling | March 2017)0

Posted by Admin in on April 19, 2017

CAPE TOWN, SOUTH AFRICA—Scientists have studied the San people of Southern Africa for decades, intrigued by their age-old rituals and ancient genetic fingerprints. Now, after more than a century of being scrutinized by science, the San are demanding something back. Earlier this month the group unveiled a code of ethics for researchers wishing to study their culture, genes, or heritage.

The code, published here on 3 March, asks researchers to treat the San respectfully and refrain from publishing information that could be viewed as insulting. Because such sensitivities may not be clear to researchers, the code asks that scientists let communities read and comment on findings before they are published. It also asks that researchers keep their promises and give something back to the community in return for its cooperation.

“We’re not saying that everybody is bad. But you get those few individuals who don’t respect the San,” says Leana Snyders, head of the South African San Council in Upington, which helped create the code.

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Why Research Oversight Bodies Should Interview Research Subjects (Papers: Carl Elliott | 2017)0

Posted by Admin in on April 12, 2017

Even though this thought provoking paper only discusses investigations relating to ethical lapses (with impacts on participants) in medical research the matters explored are very relevant to all human research (e.g. a social science project and a situation where there is a breach of a participant’s privacy). Interviewing participants not only enables the investigators to form a more complete understanding of the lapse and its impact, it can be a valuable ‘learning institution’ strategy and signal to participants how seriously the institution is taking the matter.

Research oversight bodies conducting for-cause investigations often fail to interview research subjects who have complaints of mistreatment. I argue that this failure is a mistake for three reasons. First, because written medical records are often inaccurate, there may be no entries in a study subject’s record about research-related medical harms. Second, research staff members write the reports that make up the research study records. If there are allegations that a research subject experienced research harms, subjects will rightly feel it is unfair that the for-cause investigation relies only on records written and kept by the research team. Third, the outcome of a for-cause investigation may be influenced by the ethical distance that results from failure to learn directly from research subjects about their complaints of mistreatment.
Research subjects, human experimentation, human research subject protections, research ethics, research oversight, for-cause investigations

Elliott C (2017) Why Research Oversight Bodies Should Interview Research Subjects. IRB: Ethics & Human Research. March-April 2017 39(2)

Consent based on trust rather than information? – The Ethics Blog (Pär Segerdahl | March 2017)0

Posted by Admin in on April 9, 2017

Consent to research participation has two dimensions. On the one hand, the researcher wants to do something with the participant: we don’t know what until the researcher tells. To obtain consent, the researcher must provide information about what will be done, what the purpose is, what the risks and benefits are – so that potential participants can decide whether to consent or not.

On the other hand, potential participants would hardly believe the information and consider consenting, if they didn’t trust the researcher or the research institution. If trust is strong, they might consent even without considering the information. Presumably, this occurs often.

The fact that consent can be given based on trust has led to a discussion of trust-based consent as more or less a separate form of consent, next to informed consent. An article in the journal Bioethics, for example, argues that consent based on trust is not morally inferior to consent based on information. Consent based on trust supports autonomy, voluntariness, non-manipulation and non-exploitation as much as consent based on information does, the authors argue.

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Registration is now open for the CAREB-ACCER 2017 National Conference & AGM0

Posted by Admin in on April 8, 2017

Conference: Friday, April 28 & Saturday, April 29

Pre-conference workshops: Thursday, April 27

Venue: Halifax Marriott Harbourfront Hotel in Halifax, Nova Scotia

Registration closes at 4PM (EST) on April 14th

application/pdfCAREB-ACCER 2017 Conference Agenda – Day 1
application/pdfCAREB-ACCER 2017 Conference Agenda – Day 2
application/pdfCAREB-ACCER 2017 Pre-Conference Agenda

Read further details/registration link

For most members of the AHRECS community this conference will require a fair bit of travel, but we thought the content on First Peoples, reviewing online research and the participation of women in clinical trials made it worth including in the newsroom