Professor Parker outlines the challenges presented by data science and looks at the patients’ perspective of the benefits and risks of data sharing.

1. 1
Why Data Matters
Michael Parker

2. Worries and hopes
• Patients see research using patient data and genomics as both risky
and of great potential value (e.g. Wellcome survey)
• Risky because:
• Data misuse and breaches of privacy
• Discrimination and insurance
• Commercial ‘exploitation’
• Valuable because:
• Health benefits
• Knowledge
• Risks and values are linked e.g. involvement of private companies

3. The modes and benefits of data use
• The donation (sharing) of data for research
• The co-operative use of data for clinical care:
• A patient (Sanjay) will benefit clinically through the comparison of his
data with information about other patients in database
• The existence of the database will generate knowledge about
population health
• Other patients (Mary, Siobhan, Ahmed) will benefit from the addition
of Sanjay’s data to the data set
• What might provide an ethical basis for these uses?

4. Consent and its limitations
• Consent is clearly part of the picture, but too much emphasis tends to
be placed on it as the sole solution
• It has a number of limitations:
• Genomics and data-science are complex and difficult to understand
• The future uses of data are uncertain
• Potential for uncertain and incidental findings
• Implies that any consent is going to be ‘broad’ i.e. less than fully
specific and detailed
• Done well, broad consent is valid consent

5. Fairness and social justice
• But, consent needs to be understood as part of a broader ethics
ecosystem. A good question to ask might be,
“What complementary protections and controls need to be in
place such that when people do give their valid (but inevitably
imperfect) consent, they are not exploited, discriminated
against, unfairly treated or have their privacy unacceptably
encroached upon?”
• Might these include:
• Sanctions for deliberate data misuse?
• Equity of access to health care?
• Non-discrimination?

6. A new social contract
• In our chapter for the CMO’s 2016 report we argued that there is a
need for a new social contract:
• A shared set of expectations about the ways in which scientists and
health professionals will use patient data
• Derived from public deliberation and discussion
• Enshrined in good practice guidelines and/or regulations

7. Co-operative clinical use of data as part of
the deal
• A provocative proposal
• When a patient gives consent for genomic testing - which requires the
comparison of their data with others as part of the ‘test’ -
• That patient’s data should be automatically stored in depersonalised
form in the database and be available for the clinical benefit of other
patients
• Subject to appropriate protections and data security

8. Embedding ethics
• As part of good practice decisions with an important
ethical component will need to be made
• This will involve the identification and analysis of
ethical issues and the development of solutions
• This is going to require the embedding of ethics
support and advice into decision-making about the the
kinds of large scale research and clinical under
discussion

9. Partners in the future
• The sustainable achievement of the health and societal benefits of
data science and genomics depends upon the existence of a widely
shared set of reasonable expectations for the uses of data and
genomics
• Agreement about the key requirements of ‘good practice’
• Adequate protections against harm and the misuse of data
• A basis for well-founded trust and confidence
• All of this requires the involvement of patients and publics (not the
same thing) in ‘partnership for the future’

10. 10
Thank you
Michael Parker