Philosophical accounts of the value of data and data access

Paula Boddington

Hertford College, Oxford

October, 2012

Genomic data – trouble!

• Philosophers – the ‘lovers of wisdom’ – have always valued knowledge highly, for its own sake

• This value of abstract, scientific knowledge has been stressed since the Enlightenment

• For many the search for knowledge forms a core part of a valuable human life

• Some fields of knowledge may be especially valued and considered as the concern of all of us: Alexander Pope: ‘The proper study of mankind is man’

• This thought is found in attitudes to knowledge about the human genome which seems in an important way to belong to all of us

• BUT the modern rise of the value of the individual poses problems • Because what is ‘abstract knowledge’ to some is, or relies upon,

what to others is personal data

“Standing on the shoulders of giants” - Newton

Another key value is that of scientific community

This stresses not just knowledge itself, but the social activities around knowledge transmission and creation, as Newton demonstrated when he said, following others: ‘If I have seen a little further it is by standing on the shoulders of Giants’

We need to consider these aspects very carefully when we consider the communities who produce and use knowledge derived from biobanks.

Some ethical questions in access to and use of genomic data

Knowledge may be valued intrinsically, for its own sake, or instrumentally, for what use it is Many questions are posed in terms of rights – for example: rights of access; rights to privacy; rights of ownership; rights of publication; rights of authorship or other credit; rights of non-discrimination based on genomic data; rights of access to society’s goods But I will argue that we need to broaden the range of concerns and to broaden the way in which we see the ethical issues

Methodology

• Philosophers’ accounts of knowledge and its value, including work on testimony

• Accounts of value in recent scientific policy documents • Informal questioning of interested parties • Work in the sociology of medicine and communication • Anywhere I could get any ideas … the following is an extract

from a story I was reading to my children, which made me realise how complex our different relationships may be towards knowledge.

• Background: Bobbie is the eldest child in a family. Her father has gone away somewhere, and they have moved to the north of England. She realises that her mother is hiding a secret …

The Railway Children, E. Nesbitt

That was what Bobbie was like. She knew that Mother was

unhappy – and that Mother had not told her the reason. So she just

loved Mother more and never said a single world that would let

Mother know how earnestly her little girl wondered what Mother

was unhappy about. This needs practice. It is not so easy as you

might think.

Whatever happened – and all sorts of nice, pleasant

ordinary things happened – such as picnics, games and buns for tea,

Bobbie always had these thoughts at the back of her mind.

‘Mother’s unhappy. Why? I don’t know. She doesn’t want me to

know. I won’t try to find out. But she is unhappy. Why? I don’t

know. She doesn’t …’ and so on, repeating and repeating like a tune

that you don’t know the stopping part of.

Things to note include:

• Bobbie sees herself as responsible for managing her knowledge whilst recognising that she herself is not allowed to know what it is

• She trusts her mother to know that it’s best she does not know, seeing her mother as a valid authority here; but she does not let her mother know that she’s guessed something is wrong

• She manages a delicate balance trying to protect her younger siblings from finding out

• She takes on responsibility for stewardship of the knowledge within the family

A general thought:

• A picture where knowledge/ true belief is transmitted from person to person, like a ball thrown from person to person, or a nut taken into and out of bowls, misses out too much

Sociology of medicine – communication of genetic information within families

• One: understanding knowledge requires preparation. The person is not a neutral vessel into which knowledge is poured and out of which the same knowledge flows. Examples: failure to grasp the significance of medical information, despite passing checks for ‘informed consent’, if it’s given when the patient is not ‘ready’.

• Two: the history of knowledge is vital to understanding its moral significance. Examples: knowledge revealed in traumatic circumstances, or with significance for significant others, may be ‘rejected’ or put to one side.

• Three: the onward journey of knowledge is not abstract transmission into a neutral space – it matters to people who has stewardship of knowledge. Examples: people often express concern for stewardship of medical knowledge within families, who can ‘handle’ knowledge, who has a sufficiently ‘good’ character to be trusted with the knowledge and trusted to pass it on

References:

• 2008 ‘Adolescent carrier testing in practice: the impact of legal rulings and problems with “Gillick competence”’, Paula Boddington and Maggie Gregory, Journal of Genetic Counselling, 17 (6): 509 – 521

• 2008 ‘Communicating genetic information within the family: enriching the debate through the notion of integrity’, Paula Boddington and Maggie Gregory, Medicine, Health Care and Philosophy, 11 (4): 445 – 454

• 2011 ‘The practical ethics of genetic responsibility: Non-disclosure and the autonomy of affect’ Michael Arribas-Ayllon, Katie Featherstone and Paul Atkinson, Social Theory & Health 9, 3-23 (February

2011)

Scientific policy documents about data sharing

• Concerns with the scientific process – improving outputs, increasing speed, fostering novelty and creativity, data sharing itself as a way of fostering scientific community and concerns to prevent inequalities arising

• Good data sharing and stewardship – some are seen as reliable custodians of data, some not

• A range of interested parties: Concern for data subjects, but also concern with data producers, data funders, and data users

Concerns of involved parties- informal discussions

• Some are willing to share with anyone, for the sake of advancing science and humanity

• Concern about reciprocity and with who makes a good sharer

• Concerns about impacts on scientific community worldwide – with fairness

• Concerns about protection of rights of data producers for fair credit

• Concerns about the data subject • Concerns about the impact upon scientific practice of

sharing

A range of reasons to share, or not

• Democratic or universal view of truth – We all stand in the same

relation to ‘objective’ truth

• Humanity reasons – knowledge is ‘about’ all of us

• Progress reasons – adding to edifice of abstract knowledge

• Progress reasons – adding to benefit for human race

• Data subject reasons – premised on who the knowledge is about

• Subject producer reasons – who the data comes from

• Material producer reasons – who worked on the knowledge or paid for it

• Beneficence reasons to share

• Stewardship/ custodian reasons to share

• Reciprocity reasons to share

The story of knowledge • Hence we find many commonalities – community,

relationships, and the trajectory of knowledge and information over time, through particular paths

• To understand ethical issues about the use and transmission of knowledge then we could look at it as a story, unfolding over time, with particular tellers and particular hearers; we need to understand communities and we need to understand stewardship of knowledge.

• We can also think of knowledge more organically, perhaps like a friendly (or sometimes rather dangerous) virus, as something that affects and is affected by the human beings who act as its host.

• We can think of knowledge as a person, with agency to affect those with whom it interacts

• Based upon work in progress and also on work incorporated in Ch 10 of Ethical Challenges in Genomics Research, Paula Boddington, Springer, 2012

© Paula Boddington 2012