New Guidelines Will Help People Control Use of Their Health Data

Ethical guidelines for physicians involved in the collection and use of identifiable health data and biological material in health databases and biobanks have been approved by the World Medical Association.

They set out the rights to autonomy, privacy and confidentiality that the WMA believes individuals should be entitled to in order to exercise control over the secondary use of their personal data and biological material, also beyond specific use in research.

Delegates at the WMA’s annual Assembly in Taiwan approved the guidelines, to be named The Declaration of Taipei, stating that health research represents a common good that is in the interest of individual patients, as well as society. Research using health databases and biobanks can significantly accelerate the improvement in the understanding of diseases, and the effectiveness, efficiency, safety and quality of preventive, diagnostic and therapeutic interventions.

Dr. Jon Snaedal, chair of the WMA workgroup that produced the guidelines, said: ‘During the revision process we have received advice from many outside expert organisations through two rounds of consultation. What we have tried to achieve is a balance between the rights of individuals giving their tissue or data for research and other purposes based on confidentiality and privacy rules while at the same time recognising that health data has become a very powerful tool for increasing knowledge.

‘These guidelines are based on the perspective of individuals and the need to increase transparency. People quite rightly want to know what happens to their data. We believe that informed consent, although not perfect, is the strongest instrument for protecting personal autonomy, and with it self-determination and dignity. However, we recognise that when use of data is authorized by a national law adopted through a democratic process in respect of human rights, other procedures could be adopted when strict rules on data protection are implemented.

‘Although these guidelines are addressed primarily to physicians, we would encourage others who are involved in using data or biological material in databases and biobanks to adopt these principles.’

The guidelines state that the collection, storage and use of data and biological material from individuals capable of giving consent must be voluntary. Individuals should have the right to ask for and be given information about their data and its use as well as to ask for mistakes and omissions to be corrected. Individuals should also have the right to alter their consent or to ask for their identifiable data or material to be withdrawn from databases and biobanks which would prevent future use. Where there is an immediate threat from data remaining anonymous, the requirements for consent may be waived to protect the health of the population. An independent ethics committee should confirm that each exceptional case is justifiable.

Dr. Ketan Desai, the newly elected President of the WMA, said that all national medical associations should adopt the guidelines and recommend them their members and establishments.


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