Research and legislation should go hand in hand, as much as possible

Carlos María Romeo Casabona is Director of the Interuniversity Professorship in Law and the Humane Genome at Deusto University and the University of the Basque Country. The Professorship is largely made up of jurists but also has other experts such as researchers in the fields of molecular biology, medicine and even specialists in ethics.

The Interuniversity Professorship in Law and the Humane Genome at the Universities of Deusto and the Basque Country was created in 1993. The worldwide Humane Genome project was then involved in sequencing the genome – i.e. identifying all the genetic components – for the human being. Various problems arose, such as, if the genes could or should be patented, the use to which the information would be put, and so on. Once the programme was concluded and, based on this knowledge, the Professorship in Law focused on studying how this knowledge could be applied to the diagnosis of certain illnesses. Mr Romeo explained, “What is involved is identifying genes responsible for certain illnesses, as it is known that, if one has certain genes, the risk of contracting specific illnesses is higher. This is the case, for example, of breast cancer”. The Professorship also looked at stem cells and cloning. “Our field of study is evolving as the foci of research evolves”, he added.

Research and Law

The scientific advances with the humane genome over the past decade has meant that science is in a very favourable position to treat illnesses that previously lacked any medical response and, what is more, has opened a wide range of therapeutic possibilities that are really surprising. Nevertheless, this intense scientific advance is also generating social and judicial conflicts regarding the privacy of persons, protection of data, etc. Mr Romeo recognises that all this involves information that is highly sensitive. This has spurred the Professorship to take on board this topic of data protection regarding a person’s health and other personal data. “As people we are very vulnerable regarding our personal information, more so with information which our genes provide about our health – data that is predictive, looking to the future”, explained Mr Romeo.

“This is why, research and legislation should go hand in hand”, underlined Mr Romeo. According to this researcher, the challenge for legal rights is for it to go hand in hand with advances in research, as much as possible; it has to be dynamic in the sense that it should change according to needs as they arise, given that research matters are ever-changing, especially in this case. “If research is carried out responsibly, the limits that legislation places on biomedical research should not go beyond what is necessary at each period of time” explained Mr Romeo.

“For example, the legislation on the removal and transplant of organs passed in 1979 — I drew up the text of the Bill, states Mr Romeo — , will be 30 years old at the end of this month of October.” According to Mr Romeo, there has been no need to modify this law. “The essential was there and nothing has changed, given that it would appear to be evident that permission has to be sought of a living donor to extract an organ, or the heart cannot be removed if this were to cause death, and so on”. There has been no need to make changes to this. In other cases, however, it is indeed necessary to modify existing legislation.

About the interviewee

Mr Carlos María Romeo Casabona (Zaragoza, 1952) has been full-time Professor of Criminal Law since 1996 at the University of the Basque Country (UPV/EHU). He is Director of the Interuniversity Professorship in Law and the Humane Genome at Deusto University and the UPV/EHU. He is member of the Council of Europe Steering Committee on Bioethics, of the European Research Advisory Council, of the Bioethics Committee of Spain and presides the Basque Country Ethics Committee for Clinical Research.

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