Newsletter from the Swedish National Council on Medical Ethics, December 2010

The Swedish National Council on Medical Ethics is an advisory board to the Government and the parliament on ethical issues raised by scientific and technological advances in biomedicine. Various Council activities, opinions, conferences, etc. are presented in the newsletter.

Commercial genetic testing

Early in the year, the Council submitted certain comments to the UK’s Human Genetics Commission (HGC)* ahead of the publication of their report, ‘A Common Framework of Principles for direct-to-consumer genetic testing services’. These principles were established due to the rapidly growing and partially unregulated market for commercial genetic testing offered over the counter and via the Internet. The area is highly topical and there are now also Swedish companies that offer these services.

Read the Council’s statement:

Consultation concerning direct-to-consumer genetic testing services (pdf 391 KB)

*The HGC is the UK Government’s advisory body on issues concerning new developments in human genetics. To the HGC

New independent agency for health and care services analysis

In March, the Council expressed its opinion of a proposal on establishing an independent agency tasked with monitoring and evaluating the conditions in health and medical care and social services at macro level, based on a citizen’s perspective. The Council takes a positive view of the proposal and emphasises the importance of the new agency containing ethical expertise. The Swedish Agency for Health and Care Services Analysis will start operations in the beginning of 2011.

Ethics Day 2010

On 9 April, the Council held this year’s Ethics Day, called ‘Assisted reproduction – 15 years on’, at Rosenbad Conference Centre. Since the Council expressed an opinion on this issue 15 years ago, a range of new solutions to involuntary childlessness have emerged. Research advances and public debate have generated many questions, which were discussed during the day. A number of prominent researchers were invited, and ethical, social and legal issues and problems in the area were raised. The day concluded with a dynamic panel debate.

Enhanced protection of privacy regarding insurance

In May, the Council submitted its opinion to the Ministry of Justice on a proposal for measures to enhance the protection of privacy for individuals in the area of insurance. The proposal aims to ensure that insurance companies do not routinely request permission to collect health data, and that permissions are given voluntarily and on the basis of sufficient information. As early as 2002, the Council had issued a written communication to call the Government’s attention to the need for enhanced protection of privacy regarding insurance. In its statement of opinion, the Council points out that there are still no satisfactory proposals for measures regarding the possibilities for insurance companies to collect health data on children. The legislative amendments will enter into force on 1 July 2011.

Provision on exception for hospitals

The Council has expressed an opinion on a proposal for certain amendments regarding pharmaceuticals covered by the provision on the exception for hospitals. In its opinion, the Council emphasises the importance of clear, national regulations on ethical review in each individual case regarding the use of these pharmaceuticals.

Swedish National Council on Medical Ethics given broader remit

On 1 July 2010, a new provision – Section 2 h – of the Health and Medical Service Act (1982:763) entered into force. The provision means that a care provider must ensure that a new method of treatment or diagnosis that may have an impact on human dignity and privacy has been assessed in terms of ethical aspects concerning individuals and society before it is used in health and medical care.

Under the new provision, if it is necessary to subject a method to an in-depth ethical analysis or for some other reason assess it at national level, the issue should be referred to the Swedish National Council on Medical Ethics.

Ethical aspects regarding nanotechnology

On 12 October, the Council submitted its statement ‘Ethical aspects of nanotechnology’ to the Government and the Ministry of Enterprise, Energy and Communications. The statement aims to attract attention to the ethical issues raised by the new nanosciences and nanotechnologies research, and emphasises the importance of considering ethical aspects when designing future government initiatives for research and development. The statement is in response to reports on nanotechnology by the Swedish Agency for Innovation Systems and the Swedish Chemicals Agency, which were published at the beginning of the year. The Council emphasises that a constructive ethical analysis is not only necessary for the sustainable development of nanotechnology but can very likely also boost new creative research.

Opinion Abstract: Ethical aspects regarding nanotechnology

Opinion on national vaccination programmes

In October, the Council submitted a consultation response to the Ministry of Health and Social Affairs regarding a report on a new system for national vaccination programmes. The report contains proposals on how national vaccination programmes are to be designed, financed and monitored. In addition, a new decision-making process is proposed which will mean that certain decisions are lifted to Government level and the Council is given a role by giving opinions on certain proposed decisions.

People with transsexual and other gender identity disorders

The Council has commented on the National Board of Health and Welfare report on care and support to people with transsexual and other gender identity disorders. A number of measures are presented in the report on how to improve the conditions for this vulnerable group of patients. In general, the Council supports the proposals presented in the report.

National Ethics Network’s* 7th conference

On 18 November, the Swedish Network for Clinical Ethics Committees and the Council jointly organised a conference at Rosenbad Conference Centre. This year, the conference was hosted by Örebro County Council. Bert Molewijk, Assistant Professor of Clinical Ethics at Maastricht University in the Netherlands, gave a lecture on ‘Moral Deliberation’, or the importance of having a dialogue on ethics at workplaces in health care and social services. The lecture was followed by group discussions.

*The Swedish Network for Clinical Ethics Committees is a network of Sweden’s county councils. The network aims to exchange experiences and share examples of good practice regarding work with ethics in health and medical care.

NEC Forum* in Brussels

On 28–29 October, national ethics councils of the EU countries gathered in Brussels to exchange experiences and discuss current issues concerning ethics. A new feature for this year was that the participants were separated into three parallel workshops where the following subjects were discussed:
• Commercialisation of the Human Body
• Euthanasia
• Preimplantation Genetic Diagnosis.

The Council was represented by Daniel Tarschys, Ingemar Engström and Göran Hermerén. Febe Westberg and Karin Wilbe Ramsay from the Secretariat also took part. Previously, the NEC Forum was held twice a year, but beginning in 2011, the symposium will take place once a year.

*The Forum of National Ethics Councils (NEC Forum) is an informal platform for knowledge exchange and discussion of current issues in the field of ethics and science for the EU countries’ ethics councils.

‘The elusive human dignity’

There has been great demand for the Council’s publication no 4, ‘Det svårfångade människovärdet’ (The elusive human dignity), and there are no copies left at the printing house. A new edition of the publication will be printed next year following revision.

New expert members and political members of the Council

In 2010, Ingemar Engström, Professor of Child and Adolescent Psychiatry, and Emil Bergschöld, legal adviser, were appointed expert members of the Council. This year’s new political members are Gustav Nilsson (Moderate Party) och Anders Åkesson (Green Party).

The following members were relieved of their duties during the year: Nils Lynöe, Leif Carlsson, Tuulikki Koivunen Bylund and Christina Kärvinge.