“Legislation lags behind”
Rapid advances in life sciences have created fantastic new opportunities to work with life and death. But how do we guarantee that this is being done under the rule of law? – We can’t always. Legislation lags behind, says Elisabeth Rynning, Sweden’s only professor of medical law.
Today Sweden is the only one of the Nordic countries that lacks uniform legislation on the
status of patients in healthcare. The issue has been discussed and studied for decades, but there is still no Patient Act.
– It has not received priority perhaps because it involves very difficult issues. But the rapid advances in biomedicine, for instance, increase the need with each passing year. It’s urgent that we pass legislation as soon as possible, says Elisabeth Rynning.
Today regulations applicable to patients in care are spread out in a number of different laws and are often hard to interpret.
– What rules apply, for instance, if the patient is a child? There’s nothing about
this in health and medical care law. You have to turn to the Children and Parents Code to try to figure out what parents can decide. Or what if the patient is unconscious? When do the emergency rules of the Penal Code apply? In questions involving patients that can’t make their own decisions, we don’t even live up to the Council of Europe’s minimum standards for protecting human rights.
What can medical law research contribute?
– It can analyse current law, point out weaknesses, and propose new solutions, for instance by looking at other legislation, both in Sweden and abroad. What we need are new regulations for modern patient-oriented care and a balance between the interests of research and right of individuals to self-determination and privacy protection.
Research on medical law is burgeoning. Not least the rapid advances in biomedicine have increased the need for both ethical and legal guidance.
– An area we need to look at is when you mix material from humans and animals. Swedish law has nothing whatsoever to say about this at present, says Elisabeth Rynning.
Is legislation sometimes perceived as an obstacle to research?
– Yes, that happens. But legal regulation should not be seen as a threat to progress but rather as a key part of risk management. Being conscious of risks is not necessarily about refraining but rather knowing how to manage the risks. If everything is done with insight and under controlled conditions, it’s actually possible to permit more sensitive research than if it is done silently and with no oversight.
Aren’t ethical rules sufficient?
– As I see it, the law is largely based on ethics and is an important tool to provide ethics with power to back up the words. It’s truly crucial to be able to pursue good research, but it’s also a social task that also assumes that people’s rights will be respected. We need well-considered rules that take different interests into consideration and do not expose people to arbitrary treatment. The gaps in our regulations also entail that vital research involving, for instance, unconscious people in emergency cases is not possible.
Some of what Elisabeth Rynning feels is needed is actually underway. A Patient Act is now being investigated and a bill is expected to be proposed in about a year. Another governmental study will probably once again address the issue of proxies in healthcare, and the Biobank Act is already being revised.
Annbritt Ryman
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Medical law
A relatively new research field on the borderline between law and medicine. Here legal aspects of various kinds of medical activities are explored, such as biomedical research, forensic medicine, health and medical care, and drugs.
In Uppsala research is addressing the right to health, genetic self-testing, life-sustaining treatment, and use of data about the health of individuals.
The first Nordic professorship was created in 2003 and went to Elisabeth Rynning. She is still Sweden’s only professor of medical law.
Annica Hulth