The collection, linking and use of data in biomedical research and health care: ethical issues

There are a number of values and interests at stake when claims are made about whether it is right or wrong to use data in the context of a data initiative.

The significance of data

Medical records are clearly personal, but individual data, such as whether a patient has attended their GP, are not intrinsically any more or less sensitive than any other personal information about people. What matters is the context – for example, records of fertility treatment may be highly sensitive for some people in some contexts.

The sensitivity of data is highly dependent on the context in which they are used, and how they relate to other information, people, decisions and actions, rather than how the data are categorised.

The value of privacy

Privacy is fundamentally important to individuals and groups in establishing and maintaining their identity and relationships with others. Family, group, community and even national identities may be formed and confirmed by the way information is shared.

Individuals generally see controlling access to personal information as an important aspect of maintaining their privacy. If information is accessed or disclosed against their wishes, it can affect individuals’ well-being and infringe their rights. Respecting people’s privacy shows respect for them as individuals.

However, there are circumstances in which it may be acceptable to challenge normal expectations of privacy. Sharing the confidences of a family member with strangers may infringe their privacy; on the other hand, concealing instances of domestic abuse could be more unacceptable.

Determining when it is acceptable to challenge, and potentially breach normal expectations of privacy will depend, to a great extent, on the nature of the relationship between the individuals or institutions concerned (including the state).

Confidentiality and consent

In formalised relationships, such as between a doctor and a patient, the expectation of privacy is enforced through rules of medical confidentiality. But these rules and expectations may be modified in specific cases, for example where people might consent to disclosure of their data for a specific purpose, such as a medical research project.

For consent to be valid, it must be freely given and cannot be obtained by coercion or deception. The person giving consent should be aware of the implications of doing so. This need not mean that they must be aware of every last detail of how the information will be used, but they should be aware of the details that they consider to be relevant to them.

There is considerable debate about how much information and understanding is necessary for consent to be valid.

Public and private interests

Public interest is an important concept, in particular when data initiatives are carried out with the involvement of the public sector or public funding, or are aimed at delivering public good.

As individuals, members of families, groups, communities and nations, we all have both private and public interests. There is a private interest in protecting privacy and in promoting the public good; and there is also a public interest in the protection of privacy and in promoting the public good.

People have different interests, preferences and priorities, which may complement or contradict each other. When we consider which, and whose, interests are relevant in a particular data initiative, it is important to remember that these include not only those of the people to whom data relate, but also of those making use of the data and those who have an interest in the aims or outcomes of the initiative.

Decisions about data use are complicated by the fact that there are often powerful political, economic and scientific interests, which may set out the terms of a data initiative prior to any wider public debate.

The report considers how we should identify and take into account the relevant interests and expectations about how data will be used within the context of a data initiative.