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8 Eur. J. Health L. 203 (2001)
Genetic Research: Between Freedom in Research and the Patient's Rights

handle is hein.journals/eurjhlb8 and id is 213 raw text is: European Journal of Health Law 8: 203-206, 2001. 203 © 2001 Kluwer Law International. Printed in the Netherlands. EDITORIAL Genetic Research: Between Freedom in Research and the Patient's Rights Contribution of the Declaration of Helsinki An acknowledged principle in our democratic societies, freedom in research is viewed as inherent to freedom of thinking and it is therefore accepted that its finalities be unrestricted. However, genetic research explores a very sensible domain. Indeed, what is under investigation is a person's intimate inheritance, origins, future and progeny. Not surprisingly, researchers in the field were the first to raise the issue of ethical implications of their works. Exchange of ideas among members of the scientific community made it possible to reach an international consensus reflecting a will to offer equal protection to persons, regardless of the country in which they are living - although local rules of law may occasionally diverge - while allowing scientists to go on with their research. The objective of the Oviedo convention issued by the European Council on 4 April 1997 is to protect human rights and the dignity of persons involved in biological scientific research. Under the convention's provisions, obtention of an informed written consent specially designed for individuals participating in biological research is mandatory (art. 16) and genetic testing should be strictly limited to medical or research purposes (art. 12). Also specified is the obligation to respect private life when collecting information relating to a person's health (art 10). On the other hand, the universal declaration on the human genome and human rights issued by the UNESCO on 11 November 1997 is based on more basic principles and aims at protecting the human genome as a common property of the human species. The declaration states that research on the human genome should be conducted with the purpose of alleviating ailments and improving the health of involved individuals (art. 12). The rights of persons participating in research, the declaration goes on, include the right to provide free and informed consent and the guarantee that researchers will

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