ACN - 101321555 Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Resource Library

Research Ethics MonthlyAbout Us

ResourcesPrivacy

Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Google health-data scandal spooks researchers – Science (Heidi Ledford | November 2019)0

Posted by Admin in on January 12, 2020
 

Scientists fear the controversy over the Nightingale project will undermine trust in research.

Google and one of the largest health-care networks in the United States are embroiled in a data-privacy controversy that researchers fear could jeopardize public trust in data-sharing practices and, potentially, academic studies.

At issue is a project dubbed Nightingale that gives Google access to the health-care information, including names and other identifiable data, of tens of millions of people without their knowledge. The people were treated at facilities run by the health network Ascension, which is based in St Louis, Missouri.

Google says that Nightingale, first reported in The Wall Street Journal on 11 November, is meant to develop technology that would enable Ascension to deliver improved health care.

Read the rest of this discussion piece

China Uses DNA to Map Faces, With Help From the West – New York Times ( Sui-Lee Wee & Paul Mozur | December 2019)0

Posted by Admin in on January 9, 2020
 

TUMXUK, China — In a dusty city in the Xinjiang region on China’s western frontier, the authorities are testing the rules of science.

Does your institutional guidance material speak to situations such as this, including secondary use that could present a risk to a population of people?  Do you have mechanisms to manage institutional conflicts of interest?  If not, this story highlights why such arrangements could be important.

With a million or more ethnic Uighurs and others from predominantly Muslim minority groups swept up in detentions across Xinjiang, officials in Tumxuk have gathered blood samples from hundreds of Uighurs — part of a mass DNA collection effort dogged by questions about consent and how the data will be used.
.

In Tumxuk, at least, there is a partial answer: Chinese scientists are trying to find a way to use a DNA sample to create an image of a person’s face.
.

The technology, which is also being developed in the United States and elsewhere, is in the early stages of development and can produce rough pictures good enough only to narrow a manhunt or perhaps eliminate suspects. But given the crackdown in Xinjiang, experts on ethics in science worry that China is building a tool that could be used to justify and intensify racial profiling and other state discrimination against Uighurs.
.

Read the rest of this discussion piece

Wildlife Cameras Are Accidentally Capturing Humans Behaving Badly – Nature (James Dinneen | November 2019)0

Posted by Admin in on November 25, 2019
 

Scientists face an ethical dilemma over what to do with their ‘human bycatch’

To study wildlife, Dr. Nyeema Harris, an assistant professor in the Ecology and Evolutionary Biology Department at the University of Michigan, uses camera traps — remotely triggered cameras that take pictures when they detect movement and body heat. Harris, a wildlife biologist, is not typically interested in humans, but sometimes they still end up in her photographs.

This is another example of researchers who may not be accustomed to thinking about human research ethics matters (in this case wildlife research and accidentally capturing images of people) and the question of how to inform their practice. This is really useful and important discussion. The issues in play are no different to government and others using CCTV, which they do without consent. We have created a somewhat artificial divide between research and real life. Any useful research reflects and interacts with real life. In this case, the capture is identifying some bad behaviour which is useful to know about and to act upon. The social good outweighs privacy rights. We should all be discussing this more.

Between 2016 and 2018, Harris led the first published camera trap survey ever conducted in Burkina Faso and Niger, originally conceived to focus on the critically endangered West African lion. But Harris ended up capturing so much human activity that she expanded the focus of her study to include how humans were using the area. Research on human activity in the wildlife preserve had typically relied on humans reporting their own actions, but with the cameras, Harris could see what they were actually doing. “The data emerged to be a really interesting story that I felt compelled to tell,” Harris says.
.

Even in studies conducted in remote nature reserves, meant to capture wildlife at its wildest, people showed up.
.

When camera traps inadvertently capture human activity, it’s called “human bycatch.” And according to a 2018 University of Cambridge study, Harris is far from the only researcher to have ended up with humans in the data. The study included a survey of 235 scientists across 65 countries about their experiences with human bycatch, and 90% of them reported capturing some images of people in their most recent projects. Even in studies conducted in remote nature reserves, meant to capture wildlife at its wildest, people showed up.
.

As in Harris’s study, this human data doesn’t always stay “bycatch.” Nearly half of respondents to the Cambridge survey said they had used images of people apparently involved in illegal activity to inform wildlife management efforts. Many of them had reported images to law enforcement, others to conservation staff, and some to the media. All this, despite only 8% of projects having set out to capture images of people.
.

Read the rest of this discussion piece

23andMe, moving beyond consumer DNA tests, is building a clinical trial recruitment business – STAT (Rebecca Robbins | September 2019)0

Posted by Admin in on November 23, 2019
 

SAN FRANCISCO — Consumer genetics giant 23andMe announced Thursday that it would move deeper into the business of clinical trial recruitment, partnering with a fast-growing startup to help match its customers with nearby study sites based on their diseases, demographics, and DNA.

[Our image library isn’t working at the moment, please bear with us while we work to resolve this problem.]
.
This story touches on a tricky problem: The use for recruitment purposes of a service that people would have understood to be private and not for research purposes.

The Silicon Valley company has for months been quietly making inroads into clinical trial recruitment by emailing customers who’ve opted in with recommendations about studies that might be appropriate for them. It has recruited for studies, both interventional and observational, in disease areas including Alzheimer’s, Parkinson’s, attention-deficit hyperactivity disorder, eczema, and liver disease, a spokesperson for the company confirmed.
.

But the new partnership with TrialSpark, which offers a tech-powered alternative to traditional contract research organizations, may help 23andMe address one of the biggest challenges in clinical trial recruitment: geography. The idea is that patients who want to enroll in a clinical trial centered out of, say, Memorial Sloan Kettering Cancer Center, won’t have to fly to New York and can instead participate by visiting their local doctor’s office.
.

Read the rest of this discussion piece

0