Neuroscience Data in the Cloud Opportunities and Challenges: Proceedings of a Workshop (2020) / Chapter Skim
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3 Protecting Privacy in the Cloud
3 Protecting Privacy in the Cloud
Pages 17-24
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From page 17... ...
. • Regulations regarding whether data can be shared are in con stant flux and upcoming changes to the Common Rule are likely to cause confusion about sharing genomic information (Rosati)
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The Health Insurance Portability and Accountability Act (HIPAA) regulates covered entities such as health care providers "and their business associates" and applies to "protected health information"; the Common Rule regulates federally funded research; the federal substance use disorder treatment regulations govern substance abuse information in a much more protective way than HIPAA does; the Food and Drug Administration (FDA)
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From page 19... ...
Haas and Clare Mackay, professor of imaging neuroscience at the University of Oxford, said that laws, regulations, and data access policies governing research should take participants' perspectives into account. CURRENT PROMISING PRACTICES TO PROTECT PRIVACY One of the inspirations for this workshop was an experience described by Jonathan Cohen, Robert Bendheim and Lynn Thoman Professor of Neuroscience at Princeton University.
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From page 20... ...
Participants consent upon enrollment to having their data shared, not only imaging data, but also a range of sensitive health and personal information. Data access is governed through a data access committee; researchers apply 1 For more information, see https://www.ukbiobank.ac.uk (accessed November 10, 2019)
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From page 21... ...
NOTE: BAA = business associate agreement; HIPAA = Health Insurance Portability and Accountability Act; IS = information services; PM = Perelman School of Medicine at the University of Pennsylvania; SSN = Social Security number; TCPA = Telephone Consumer Protection Act. 21 SOURCE: Presented by William Hanson, September 24, 2019.
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From page 22... ...
The Field platform infrastructure has been developed not only to facilitate data sharing, but data aggregation and cross-cohort analyses as well. It uses a single point of entry for requesting access to data but, like WIN, assigns responsibility for granting access to the individual data access committees.
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From page 23... ...
Ideal consent forms enable individuals to share their data with large data-sharing platforms and other collaborative efforts. Haas added that templates for consent should use universally accepted definitions regarding what types of data are particularly sensitive in this changing landscape of regulation and what qualifications should researchers have to gain access to data.
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From page 24... ...
Rosati noted that most data use agreements fail to specify whether an individual researcher or the institution is responsible if data are misused. Barch and Hanson discussed the utility of having institution- riented resources of common practices for data sharing and use o in agreements with commercial entities, including details such as secondary relationship governance in the case of the original company being acquired.
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