WRITTEN QUESTION E-0161/02

by Cristiana Muscardini (UEN) to the Commission

(4 February 2002)

Subject: Misleading information on Internet sites about melanoma

On 17 January 2002 the Italian weekly Panorama reported that, according to the results of a survey published in the Journal of Clinical Oncology, the information given out about melanoma on many Internet sites is incorrect or incomplete. The experts examined 76 sites and evaluated them according to 35 factors (basic information, incidence, risk factors,

therapies, etc). Only eight of the factors were included on at least half the sites; no one piece of information appeared on more than 62 % of them; and 14 % of the sites had erroneous information.

In the light of these findings and given that similarly vague and misleading information is given out on other health matters:

1. Is the Commission aware of this research?

2. Has the Commission set up or financed any research groups studying melanoma?

3. If so, can the Commission state how many of these groups have placed their findings on the Internet?

4. Does any legislation exist regulating the ethical aspects publication of scientific information on the Internet?

5. Does the Commission believe that action should be taken, not so much to penalise sites responsible for misleading information as to bring about improvements in quality and thus further the effectiveness of consultation by all those who seek new forms of therapy and are likely to trust the information they find on-line?

Answer given by Mr Byrne on behalf of the Commission

(15 April 2002)

1. The Commission became aware of this piece of Internet research through the information provided by the Honourable Member. A close look at the publication revealed that the authors concentrated on the United States, and discarded all non English-language web sites as inaccessible. It seems that no European sites were included in the analysis.

2. Directorate general (DG) Research has supported research into the treatment of melanoma over the last ten years, mainly basic research (in-vitro techniques). Over the last six years the Community has funded research on imuno-therapy as a treatment. However, further research is still needed to make it clinically possible.

3. Due to the very nature of the research supported by DG Research the results have been published in scientific journals though no findings of a clinical nature have been put on the Internet.

4. No European legislation exists regulating the ethical aspects of scientific information on the Internet. Nevertheless, many funding bodies require that any published information resulting from the funded research should be truthful.

5. On 15 June 2000, the Commission submitted to the Council and to the Parliament a proposal based on Article 152 of the EC Treaty for a Decision of the Parliament and of the Council adopting a programme of Community action in the field of public health(1). After its final adoption the new public health action plan will support the development of a comprehensive health information system, which may also include comprehensive information on cancer, including melanoma. The question of best practice, certification and quality control will be addressed.

For the present time it might help to make use of the many cancer information services established in many Member States or European regions. The Krebsinformationsdienst (KID)(2) of the German Cancer Centre or the web portals of many members of the European cancer leagues or cancer societies might serve as an example of how the european citizen can obtain comprehensive and truthful information on cancer.

(1) OJ C 337 E, 28.11.2000.

(2) Tel.: (+49) 6221 410121 or http://www.krebsinformationsdienst.de.