Public hearings to involve new parties in drawing up the declaration of genetic dataParis – A day of public hearings on human genetic data is being organised by UNESCO in Monaco on 28 February as part of its project to draw up an international declaration on such data. Ten civil society groups and institutions – representing indigenous people, people with disabilities and doctors, but also the private sector and especially insurance companies – are expected to take part.
The speakers at the event – which will be held at the Métropole Palace hotel from 10 a.m. – will include the International Society of Bioethics (SIBI), the World Medical Association (WMA), the World Association of Children’s Friends (AMADE), the European Forum for Good Clinical Practice, the International Federation of University Women, Inclusion International, the European Association for Bioindustries (Europabio), the French Federation of Insurance Companies, the National Association of Maori Mathematicians, Scientists and Technologists and the Genetics Institute of the National University of Colombia.
The hearings will enable these parties to become involved in drafting the declaration and are part of international consultations on human genetic data initiated by UNESCO. A questionnaire was sent out this month to all member-states and to other international organisations. The consultation process will end in June with a meeting in Paris of government experts.
The number of human genetic databanks is growing and some countries have even started a genetic census of their population. Such databanks provide information for courts and police, such as proof of paternity or the identity of a sex offender or accident victim. In varying degrees, they are also used by doctors. Genetic tests are already detecting illnesses such as cystic fibrosis. Other tests can only indicate that the disease might appear but can provide valuable information to help prevent it. Research using human genetic data also seems promising for understanding and treating many illnesses.
But such data raises ethical problems concerning its collection, processing, storage and use. Many fear it will be used for purposes that curb freedoms and lead to discrimination and new forms of prejudice.
So for people with disabilities, genetic data has disadvantages too. They are pleased that it may improve medical care but are worried about any possibility of “genetic cleansing.” As the number of genetic tests increases, will the number of discarded human embryos increase too. For indigenous people, there are a wide range of problems. Taking samples, especially of blood, can upset some people who see it as a violation of their body. The notion of individual consent that prevails in liberal Western societies may also not be appropriate in some other cultures. Also, because genetic data from very isolated groups of people is especially valuable to some scientists, such groups may be exploited.
These problems, among many others, show how useful a document setting international standards for collecting, processing, storing and using genetic data would be. The proposed declaration now being discussed is the work of a Drafting Group of UNESCO’s International Bioethics Committee. The Committee had a first look at a draft in November last year. After the day of public hearings, the Drafting Group will meet on 1 and 2 March in Monaco to resume work on the text.