Hanna Toiviainen

Medical and lay attitudes towards genetic screening and testing in Finland

The purpose of this study was to compare physicians, midwives and lay peoples attitudes towards genetic screening and testing to find out whether medical education and experience influence attitudes of genetic screening and testing. The study was based on comparison of answers to joint questions in three different cross-sectional postal surveys between October 1996 and April 1998 in Finland. Target groups were physicians (study base n=772, response rate 74%, including gynaecologists, paediatricians, general practitioners and clinical geneticists), midwives and public health nurses (collectively referred to as midwives in the following; n=800, response rate 79%), and lay people (n=2000, response rate 62%). Midwives were more worried about the consequences of genetic testing and stressed the autonomy of the customer more strongly than lay people did. Furthermore, professionals considered that lay peoples expectations as regards to genetic testing are too high. Having more medical education was related to having less ‘cannot say’ and missing responses. Our results do not suggest that major conflicts about the direction of genetic testing and screening would arise in near future. However, different positions and interests should be considered. Reporting in public about new prospects and developments in medical genetics should pay more attention also to concerns for balancing promises and drawbacks.

Co-operation between patient organisations and the drug industry in Finland

The aim of the study was to investigate the co-operation between patient organizations and the drug industry in Finland prior to critical discussions on the topic. The data were gathered by a questionnaire survey of 85 patient organisations (response rate 65%, n = 55) and 20 drug firms (response rate 100%) in 2003, and by interviewing 13 organisations and surveying their web-pages and other documents in 2004. In the surveys, half of the patient organisations and 80% of the drug firms considered co-operation important. Most (71%) organisations reported financial support from the drug industry. Most organisations and drug firms had experienced problems. Common problems for organisations were too little or too unpredictable support from industry, and threats to independence and objectivity. Drug firms frequently mentioned unclear rules of co-operation. The patient organisation interviews exhibited similar themes and findings to those found in the surveys, revealing the complexity and importance of co-operation in organisation activities, and the variation between organisations. This case study from Finland showed that co-operation between patient organizations and the drug industry was common, many-sided and not usually transparent. The close connections between patient organizations and commercial companies, particularly drug firms, raise several policy issues and the need for action.

Drug reimbursement in Finland--a case of explicit prioritising in special categories

Increased drug expenses have created challenges for drug reimbursement systems in many industrialised countries, including Finland. Prioritization of drugs could be one solution to this problem. This paper examines stakeholders perspectives on the prioritization decisions made in the Finnish drug reimbursement system, particularly concerning drugs in the higher reimbursement categories. The analysis was based on 18 interviews with key stakeholders. The results revealed that authorities directly influencing the decisions tried to keep them as technical and non-political as possible. However, doing so was not easy, and there appeared to be hidden non-technical rationales behind many decisions. Stakeholders outside public administration had few opportunities to openly participate in decision-making because of the lack of transparency of the process. Despite this, they tried to influence decisions concerning their interests by using several means, such as lobbying the media, Parliament or other stakeholders. Transparent decision-making and better methods of open discussion on competing interests could promote democracy in the prioritization of drugs and perhaps reduce the harmful effects of indirect and unequal participation by different stakeholders.

Acceptance of screening and abortion for Down syndrome among Finnish midwives and public health nurses.

In this study we evaluated how well maternal serum screening and abortions for Down syndrome were accepted among midwives and public health nurses, and compared how those who accepted and did not accept abortions for Down syndrome differed from each other. The questionnaire was mailed in 1998 to 400 midwives and 400 public health nurses. 79 per cent responded. The majority said that all pregnant women should be offered a screening test for Down syndrome, but less than half accepted abortion for Down syndrome. Thus, the ‘informative part’ of the screening (serum screening itself) is supported more often than the ‘operative part’ (selective abortion)—or at least the ‘operative part’ was found to be a more difficult question. We suggest that whereas screening may be perceived as a question of more choices, information and self‐determination, abortion is more clearly a moral question. The professional background characteristics and attitudes of those accepting and not accepting abortion for Down syndrome were relatively similar, but having a midwifes education, practical involvement in serum screening and having patients with Down syndrome were associated with a somewhat higher percentage of acceptance and a lower percentage of ‘don’t know responses. Copyright

Patient organizations in Finland: increasing numbers and great variation

Objectiveu2002 There is very little research on patient organizations (POs), even though their numbers and influence seem to be increasing. The purpose of this study was to describe the establishment, membership, size, organization, decision making and basic funding of national POs in Finland.

Physicians’ opinions on patients’ requests for specific treatments and examinations

Objectiveu2002 The number of technologies used in health care is growing, patients’ educational level has risen, health and drug information is increasingly available and patients today are actively looking for information from different sources. The aim of the study was to investigate physicians’ opinions on patients’ requests for specific treatments and examinations.

Finnish physicians' attitudes towards preconsultation information: Menopausal treatment practices as an example

The purpose of this study was to investigate Finnish physicians attitudes towards consumer groups provision of information about physicians treatment practices, using menopause as a specific example. A questionnaire to be used to make a public brochure listing physicians by their menopausal and postmenopausal treatment practice was sent by consumer organizations to 812 physicians [gynecologists and general practitioners (GPs)] in 1995, after contacting the physicians associations for support for this activity. The gynecological association had a negative attitude towards the study while that of the GPs association was more favorable. The response rate was 38% (n = 307). Only 5% of the physicians who got the questionnaire wanted to participate in the planned brochure and only 21% of those responding considered preconsultation information a good idea. The most common reasons for not wanting to participate were that preconsultation information is medically unfeasible and that it would be incompatible with physicians current working practice. Approaches other than public brochures about physicians treatment patterns are needed if we want to increase patients participation in decision-making.

Finnish physicians' interest in genetic screening.

Objectives: To report on Finnish physicians’ opinions on the possible future use of genetic screening and their interest in knowing their own risk for diseases. Methods: A questionnaire survey mailed to gynaecologists, paediatricians, general practitioners and clinical geneticists. Both leading physicians and a sample of other practitioners were included (response rate 74%, n = 571). Results: Physicians preferred genetic testing of people at risk over population-wide screening. Breast and colon cancer, familial hypercholesterolaemia and juvenile diabetes were diseases for which screening was most often considered useful. The most popular target group was the whole population. Opinions on the suitability of genetic screening were not uniform, and physicians did not take a stand on genetic screening as a whole but differentiated by disease and target group. Those wanting to know their own risk for diseases supported screening procedures in general more than did other physicians. Conclusions: Physicians were not enthusiastic about genetic screening. Nevertheless, testing of individuals with a family history of certain diseases is likely to become more widespread.

Views of Finnish doctors on fetal screening

Objective To investigate the views of Finnish doctors concerning fetal screening.

Impact of prenatal screening on maternity services - Finnish physicians' opinions

BACKGROUNDnThe purpose of this survey was to find out whether Finnish physicians had thought about or had observed resource or organizational effects due to the offering of prenatal screening.nnnMETHODSnA mailed questionnaire survey sent in 1996-1997 in Finland to all leading Finnish obstetrician-gynecologists, to a random sample of obstetrician-gynecologists providing prenatal care, to general practitioners providing maternity care, and to other general practitioners. The number of respondents was 322 (response rate 70%).nnnRESULTSnMost physicians supported the screening programs currently in wide use in Finland (serum screening for Downs syndrome and ultrasound for malformations), and over a third wanted to introduce the two genetic carrier screenings asked about. Most thought Downs screening took up resources, but they did not consider this to be important. The impact of screening on public or customer images of prenatal care was not an important issue. Instead, a diversity of opinions was expressed on whether the increasing numbers of prenatal screenings require organizational changes in current prenatal care provided within primary care, or whether a shift to hospital clinics is necessary to achieve more specialized care.nnnCONCLUSIONSnMost physicians were not concerned by the potential organizational and resource implications of prenatal screening, and apparently they judge screening more from a health and individual patient point of view.