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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

(US) Google and the University of Chicago Are Sued Over Data Sharing – New York Times (Daisuke Wakabayashi | June 2019)0

Posted by Admin in on October 17, 2019
 

SAN FRANCISCO — When the University of Chicago Medical Center announced a partnership to share patient data with Google in 2017, the alliance was promoted as a way to unlock information trapped in electronic health records and improve predictive analysis in medicine.

On Wednesday, the University of Chicago, the medical center and Google were sued in a potential class-action lawsuit accusing the hospital of sharing hundreds of thousands of patients’ records with the technology giant without stripping identifiable date stamps or doctor’s notes.

The suit, filed in United States District Court for the Northern District of Illinois, demonstrates the difficulties technology companies face in handling health data as they forge ahead into one of the most promising — and potentially lucrative — areas of artificial intelligence: diagnosing medical problems.

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Management of Data and Information in Research (NHMRC An Australian Code (2018) good practice guide | June 2019)0

Posted by Admin in on September 29, 2019
 

A guide supporting the Australian Code for the Responsible Conduct of Research

aContents

1. Introduction 1

2. Responsibilities of institutions 1
2.1 Provision of training for researchers 2
..2.2 Ownership, stewardship and control of research data and primary materials 2
2.3 Storage, retention and disposal 3
2.4 Safety, security and confidentiality 3
2.5 Access by interested parties 4
2.6 Facilities 4

3. Responsibilities of researchers 4
3.1 Retention and publication 6
3.2 Managing confidential and other sensitive information 7
3.3 Acknowledging the use of others’ data 7
3.4 Engagement with relevant training 7

4. Breaches of the Code 7

Additional Resources 8

Access the good practice guide

Why We Need Guidelines for Brain Scan Data – Wired (Evan D. Morris | September 2019)0

Posted by Admin in on September 18, 2019
 

Your brain is a lot like your DNA. It is, arguably, everything that makes you uniquely you. Some types of brain scans are a lot like DNA tests. They may reveal what diseases you have (Parkinson’s, certainly; depression-possibly), what happened in your past (drug abuse, probably; trauma, maybe), or even what your future may hold (Alzheimer’s, likely; response to treatment, hopefully). Many people are aware—and properly protective—of the vast stores of information contained in their DNA. When DNA samples were collected in New York without consent, some went to great lengths to have their DNA expunged from databases being amassed by the police.

Fewer people are aware of the similarly vast amounts of information in a brain scan, and even fewer are taking steps to protect it. My colleagues and I are scientists who use brain imaging (PET and fMRI) to study neuropsychiatric diseases. Based on our knowledge of the technologies we probably ought to be concerned. And yet, it is rare that we discuss the ethical implications of brain imaging. Nevertheless, by looking closely, we can observe parallel trends in science and science policy that are refining the quality of information that can be extracted from a brain scan, and expanding who will have access to it. There may be good and bad reasons to use a brain scan to make personalized predictions. Good or bad, wise or unwise, the research is already being conducted and the brain scans are piling up.

PET (Positron Emission Tomography) is commonly used, clinically, to identify sites of altered metabolism (e.g., tumors). In research, it can be used to identify molecular targets for treatment. A recent PET study of brain metabolism in patients with mild cognitive impairment predicted who would develop Alzheimer’s disease. In our work at Yale, we have used PET images of a medication that targets an opioid receptor to predict which problem drinkers would reduce their drinking while on the medication.

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Open consent, biobanking and data protection law: can open consent be ‘informed’ under the forthcoming data protection regulation? (Papers: Dara Hallinan & Michael Friedewald | 2015)0

Posted by Admin in on August 22, 2019
 

Abstract
This article focuses on whether a certain form of consent used by biobanks – open consent – is compatible with the Proposed Data Protection Regulation. In an open consent procedure, the biobank requests consent once from the data subject for all future research uses of genetic material and data. However, as biobanks process personal data, they must comply with data protection law. Data protection law is currently undergoing reform. The Proposed Data Protection Regulation is the culmination of this reform and, if voted into law, will constitute a new legal framework for biobanking. The Regulation puts strict conditions on consent – in particular relating to information which must be given to the data subject. It seems clear that open consent cannot meet these requirements. 4 categories of information cannot be provided with adequate specificity: purpose, recipient, possible third country transfers, data collected. However, whilst open consent cannot meet the formal requirements laid out by the Regulation, this is not to say that these requirements are substantially undebateable. Two arguments could be put forward suggesting the applicable consent requirements should be rethought. First, from policy documents regarding the drafting process, it seems that the informational requirements in the Regulation are so strict in order to protect the data subject from risks inherent in the use of the consent mechanism in a certain context – exemplified by the online context. There are substantial differences between this context and the biobanking context. Arguably, a consent transaction in the biobanking does not present the same type of risk to the data subject. If the risks are different, then perhaps there are also grounds for a reconsideration of consent requirements? Second, an argument can be made that the legislator drafted the Regulation based on certain assumptions as to the nature of ‘data’. The authors argue that these assumptions are difficult to apply to genetic data and accordingly a different approach to consent might be preferable. Such an approach might be more open consent friendly.

Hallinan, D. and M. Friedewald (2015). “Open consent, biobanking and data protection law: can open consent be ‘informed’ under the forthcoming data protection regulation?” Life Sciences, Society and Policy 11(1): 1.
Publisher (Open Access): https://lsspjournal.biomedcentral.com/articles/10.1186/s40504-014-0020-9

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