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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

(US) Rounding up the Belmont Report Retrospectives – Amp@sand (May 2019)0

Posted by Admin in on June 27, 2019
 

Last month brought the 40th anniversary of the publishing of the Belmont Report, and along with that milestone came a reflection on how its values, conclusions, and imperatives have changed in the intervening years. A celebration of its durability has been accompanied by a necessary reckoning with the ways that a 40-year-old document may be ill-equipped to process the ethical issues brought about by technological, cultural, and political changes. Here, we’ve gathered a range of resources that look back on 40 years of the Belmont Report.

Safeguards for human studies can’t cope with big data
Nature
This provocative piece explores the ways in which the Belmont Report is insufficient for dealing with revolutionary digital technologies, arguing that “data science overlooks risks to human participants by default” and that it is “past time for a Belmont 2.0.” That new summit, the author argues, would need to engage with the currently “poorly understood risks and harms” that big data researches poses to humans.

A Belmont Report for Health Data (abstract available)
The New England Journal of Medicine
HIPAA offers robust protection of a limited range of data, but in 2019, the demands on humans’ health data come from far more directions than the 1996 legislation could anticipate. The authors of this NEJM piece call for a coordinated expansion of the scope of ethical review of the gathering, use, and manipulation of health data to account for sources such as “social-media platforms, health and wellness apps, smartphones [and] life insurers,” citing concerns about reidentification of deidentified data, discrimination, health profiling, and more.

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Misreporting the science of lab-made organs is unethical, even dangerous – The Conversation (Cathal D. O’Connell | May 2019)0

Posted by Admin in on June 25, 2019
 

I work in the field of bioprinting, where the aim is to build biological tissues by printing living cells into 3D structures.

Last month I found my Facebook news feed plastered with an amazing story about “the first 3D printed heart using a patient’s own cells”. A video showed a beautiful, healthy-looking heart apparently materialising inside a vat of pinkish liquid.

Big news. According to an impact tracking algorithm, the story has been picked up by 145 news outlets, tweeted 2,390 times to 3.8 million followers (as of May 27, 2019). Articles on Facebook have at least 13,000 shares, and videos about the story have been viewed well over 3 million times.

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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.

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How Do You Publish the Work of a Scientific Villain? – WIRED (Megan Molteni | December 2018)0

Posted by Admin in on June 11, 2019
 

HOW DO YOU handle the data of a scientist who violates all the norms of his field? Who breaches the trust of a community that spans the entire globe? Who shows a casual disregard for the fate of the whole human species?

On the one hand, you might want to learn from such a person’s work; to have a full and open dissection of everything that went wrong. Because, spoiler, there was a lot that went wrong in the case in question. But rewarding such “abhorrent” behavior, as one scientist put it, with a publication—the currency of the scientific world—would send a message that ethical rules only exist to be broken.

This is the precarious situation in which we find ourselves today, as scientists hash out the next chapter of the human gene-editing scandal that erupted two weeks ago, when the Chinese scientist He Jiankui revealed that for the last two years he has been working in secret to produce the world’s first Crispr-edited babies. Scientists denounced the work with near-unanimous condemnation, citing its technical failures as well as its deep breaches of ethical (and possibly legal) lines. What’s much less certain is what should happen to the work, now that it’s been done.

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