Ethical Issues of Human Genetic Databases by Elger Bernice;McLean Professor Sheila A M;

Author:Elger, Bernice;McLean, Professor Sheila A M;
Language: eng
Format: epub
Publisher: Taylor & Francis Group
Published: 2010-08-15T00:00:00+00:00

Who is responsible for granting confidentiality?

Responsibility is assigned to a range of different people and bodies. The UNESCO Declaration on Human Genetic Data states that the ‘privacy of an individual participating in a study using human genetic data, human proteomic data or biological samples should be protected and the data should be treated as confidential’ (UNESCO 2003, Art. 14 ‘Privacy and Confidentiality’). A particular aspect of the Declaration is the announcement of a responsibility of the state concerning confidentiality: ‘States should endeavour to protect the privacy of individuals and the confidentiality of human genetic data linked to an identifiable person, a family or, where appropriate, a group, in accordance with domestic law consistent with the international law of human rights’ (UNESCO 2003, Art. 14).

The guidelines of the CEST (2003, 50–51) require that the administrator of a genetic databank and the researchers using the data and samples guarantee the security of the personal data.

The WHO Regional Office for Europe announces that ‘the onus of ensuring adequate protection of privacy falls on the shoulders of those who gather and use genetic information and samples, especially if this is with a view to storage in a database’ (WHO 2001, 16).

The guidelines of the UK Medical Research Council state that all medical information should be treated confidentially: ‘Doctors and researchers should treat any information about an individual, however derived, as confidential. This is what the public expects’ (MRC 2001, 13–14). The responsibility for granting confidentiality is with the researchers and all other individuals in contact with the data:

Each individual entrusted with patient information is personally responsible for their decisions about disclosing it. Personal information should only be handled by health professionals or staff with an equivalent duty of confidentiality. Principal investigators have personal responsibility to ensure that procedures and security arrangements are sufficient to prevent breaches of confidentiality (MRC 2001, 13).

According to the guidelines of the College of American Pathologists, the responsibility for ensuring confidentiality is assigned to the pathologist:

Implicit in the pathologist’s stewardship is the duty to maintain the confidentiality of the information contained in the patient’s medical record. Confidentiality means that information will not be disseminated freely. This implies that the information will be held in confidence and constitutes a trust, if not a fiduciary duty, not to disclose the information to others without the person’s consent, actual or implied, or otherwise in his or her interest (Grizzle et al. 1999, 297).

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