Quality (140) Digital identity (4) Confidentiality or secrecy? (2)

15 July, 2021

Just saw Richard Fitton's post of 11 July. [ https://www.hifa.org/dgroups-rss/quality-124-digital-identity-3-confiden... ]

I think the discussion of confidentiality, secrecy, privacy and anonymity operates on distinct levels in respect of medical records, on one hand, and medical research, on the other.

With medical records, the purposes of keeping patient information confidential or secret include 1) the Hippocratic Oath ("...whatsoever I shall see or hear in the course of my profession, as well as outside my profession in my intercourse with men, if it be what should not be published abroad, I will never divulge, holding such things to be holy secrets."), and 2) to preserve the patient's data from the interests of potentially unwelcome eyes, such as those of insurance companies, banks and the State.

In medical research, there is often the added concern about letting friends, family and the neighbouring community know about individuals' medical conditions, and the impact of any de-anonymisation on the research project itself. In research projects, anonymisation must usually be done in such a way that it is impossible to reverse - so that noone, not even the computer or data staff, can track back to an individual. This kind of anonymisation is usually not practised with medical records.

BTW, this post originally caught my eye because of the comment that "she thought [the UN ID2020 initiative] was "Big Brother--ish. (*** Aldous Huxley had published in 1932 his futuristic novel *Brave New World*"...). Wrong dystopian novel - "Big Brother" is from Orwell's 1984, not Huxley's Brave New World....

Best,

Chris

Chris Zielinski

chris@chriszielinski.com

Blogs: http://ziggytheblue.wordpress.com and http://ziggytheblue.tumblr.com

Research publications: http://www.researchgate.net

HIFA profile: Chris Zielinski: As a Visiting Fellow in the Centre for Global Health, Chris leads the Partnerships in Health Information (Phi) programme at the University of Winchester. Formerly an NGO, Phi supports knowledge development and brokers healthcare information exchanges of all kinds. Chris has held senior positions in publishing and knowledge management with WHO in Brazzaville, Geneva, Cairo and New Delhi, with FAO in Rome, ILO in Geneva, and UNIDO in Vienna. Chris also spent three years in London as Chief Executive of the Authors Licensing and Collecting Society. He was the founder of the ExtraMED project (Third World biomedical journals on CD-ROM), and managed the Gates Foundation-supported Health Information Resource Centres project. He served on WHO’s Ethical Review Committee, and was an originator of the African Health Observatory. Chris has been a director of the World Association of Medical Editors, UK Copyright Licensing Agency, Educational Recording Agency, and International Association of Audiovisual Writers and Directors. He has served on the boards of several NGOs and ethics groupings (information and computer ethics and bioethics). UK-based, he is also building houses in Zambia. chris AT chriszielinski.com

His publications are at www.ResearchGate.net and https://winchester.academia.edu/ChrisZielinski/ and his blogs are http://ziggytheblue.wordrpress.com and https://www.tumblr.com/blog/ziggytheblue