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(US) UCSD has not told women with HIV of data breach, despite researchers’ pleas – inewsource (Jill Castellano & Brad Racino | May 2019)0

Posted by Admin in on June 22, 2019
 

University of California San Diego officials stonewalled attempts to notify women in an HIV research study that their confidential data was breached more than seven months ago, an inewsource investigation has found.

The commentary sidebar on the inewsource website sums up well why this is a big deal. If the story is correct, the breach is serious enough, but the failure to warn the women was a complete betrayal of trust.

UCSD researchers conducting the EmPower Women study told university officials in October that participants’ names, audio-taped conversations and other sensitive materials were made accessible to everyone working at Christie’s Place, a San Diego nonprofit supporting women with HIV and AIDS. They called the situation “very serious” and said the women affected are “within one of the most vulnerable and marginalized populations.”
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But internal emails, reports and meeting minutes chronicle months of communication between lead researcher Jamila Stockman — who pushed for telling two dozen women enrolled in the project about the breach — and UCSD officials concerned about the consequences.
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Read the rest of this new story

People want to be able to influence the risk – The Ethics Blog (Pär Segerdahl | May 2019)0

Posted by Admin in on June 16, 2019
 

We need to do research to know what people think is important in genetic risk information. What they prefer to know. But how do we find out? One way is to ask people to answer questionnaires.

One problem with questionnaires is that they ask one thing at a time. Do you prefer a hotel room with a sea view when you are on vacation? You probably answer yes. But do you prefer the sea view even if the room is above the disco, or costs 500 EUR per night? If you only ask one thing at a time, then it is difficult to know how different factors interact, how important they are relative to each other.

One way to get past this limitation is to ask people to choose between two alternatives, where the alternatives have several different attributes.

Read the rest of this discussion piece

(US) ‘Banished’ blood, stool samples from San Diego veterans used in research article, despite federal probe – ienewsource (Brad Racino & Jill Castellano | May 2019)0

Posted by Admin in on June 6, 2019
 

Two prominent doctors associated with the University of California San Diego and the local VA used blood and stool samples taken from sick veterans to bolster a paper published this month in an academic research journal.

The specimens were not supposed to be used, according to the project’s lead researcher, because they were part of a study that unethically collected biological samples from living subjects without their consent, which investigators called “serious noncompliance.”

When people volunteer to be human research subjects, they accept potential health risks in order to contribute to a growing bank of scientific and medical knowledge.

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Research Ethics Governance – An African Perspective (Chapter: Marelize I. Schoeman | May 2019)0

Posted by Admin in on June 2, 2019
 

Abstract
Governance structures in research are generally a retrospective response to unethical research practices. Similar to the international research landscape Africa has not been immune to human research abuses inclusive of unethical experimentation and clinical trials. An increase in research was noted in Africa this past decade in response to serious psychosocial and health-related challenges the continent faced. This increase in research has not necessarily brought about improvements in the governance and oversight of human research practices. In contrast, it increased the risk of exploitative research funded by resource-rich countries who conducted studies in Africa that would be difficult to conduct in countries with more established and strict research regulatory frameworks.

Even though the impact colonialism and the internationalisation of research had on ethics governance is recognised, African scholars is of the opinion that the debate about research ethics governance largely represents the opinions of scholars from Euro-western countries, with little contribution being made by African scholars. Against this background, the chapter presents an Afrocentric viewpoint of research ethics governance. In addition, Westernised and African research ethics practices and oversight structures were compared to identify challenges and guidelines. The research ethics governance landscape is to a large extent still an uncharted landscape creating the opportunity to develop a research ethics governance framework that acknowledges the unique humanistic morality and normative set of social rules and principles that guide the conduct of people in African societies. The chapter aims to make a significant contribution by stimulate critical discourse about the relevance of ethical principles and governance structures currently used in Africa.

Keywords
Research ethics governance, Research ethics committees, Biomedical research, Social science research 

Schoeman M.I. (2019) Research Ethics Governance – An African Perspective. In: Nortjé N., Visagie R., Wessels J. (eds) Social Science Research Ethics in Africa. Research Ethics Forum, vol 7. Springer, Cham
Publisher: https://www.springer.com/978-3-030-15401-1?wt_mc=ThirdParty.SpringerLink.3.EPR653.About_eBook

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