THE DEVELOPMENT OF PRE-NATAL SCREENING IN EUROPE:

THE PAST, THE PRESENT AND THE FUTURE

This study is funded by EU European Commission BIOMED 2 (DG 12) and the participating institutions.

This homepage includes:

Objectives of the project are:


The project aims at identifying the main ethical, legal and social issues related to the development of prenatal screening in Europe. With regards the current state of the art, it attempts to anticipate the potential problems inherent within these developments; yield an early caution for new concerns and recognise fundamental values that could be the basis for a needed consensus.

Brief description:


The unfolding of prenatal screening and the public awareness of this development provide a new framework for the perception of important ethical, legal and social issues. The project's purpose is to identify the key ethical, legal and social aspects of developments in prenatal screening in order to inform public policies in the fields of public health and biomedicine. A network design is utilised because it is beneficial in multi-disciplinary, cross cultural, health research which involves the coordination of information, joint data analyses, and cross cultural comparisons.

The research issues are approached

  1. by theoretical analyses, literature analyses and studies of archives and
  2. by asking the players (ie. experts, treaters, and laypeople) their perceptions in interviews and questionnaire surveys.

Four main studies will produce data for cross-cultural comparisons. They include:

  • An overall mapping of individual countries' services;an outline of their legal and ethical codes and an extensive literature review of the popular press and professional journals (Study A)
  • Three studies of key player's including
    • An interview survey of key experts (Study B)
    • A questionnaire survey of physicians (Study C)
    • A questionnaire survey of midwives (Study D)

In addition to these main studies, there are 'country specific studies' in the area of lay people's women's and family's experiences of prenatal screening. While recognising the multi-cultural nature of European societies, the project aims to focus on specific issues, relevant in public discussions. Country specific studies include:

  • A study of women's experience of the maternal serum triple test in Finland, Greece and the Netherlands (Study Ea)
  • Lay people's knowledge and information needs for prenatal screening in Finland (Study Eb)
  • A study of affected persons' perceptions of genetic screening in the UK and in Finland (Study Ec)

The project should heighten the awareness amongst potential users and consumers and of prenatal screening services in Europe and enable them to make informed choices in this area.

Keywords:

prenatal screening, genetic screening, medical ethics, social effects, information needs

Participating partners include:

FINLAND

  • Dr. Elizabeth M. Ettorre, Project Coordinator, Department of Sociology, University of Helsinki, P. O. Box 35,00014 Helsinki University; e-mail:ettorre@valt.helsinki.fi, also University of Plymouth, Department of Sociology, Drake Circus, Plymouth, Devon PL4 8AA, UK
  • Prof. Elina Hemminki, M.D, Ph.D., National Research and Development Centre for Welfare and Health (STAKES), Health Research Unit, P.O. Box 220, 00531 Helsinki
  • Dr. Arja R. Aro, National Public Health Institute(KTL), Department of Epidemology and Health Promotion, Mannerheimintie 166, 00300 Helsinki
GREECE
  • Prof. Thalia Dragonas, Department of Preschool Education,University of Athens, 13 Navarinou Street, 106 80 Athens
  • Dr. Eleni Adam, Department of Social Pediatrics, The Institute of Child Health, Children's Hospital 'Aghia Sophia', 11521 Athens

NETHERLANDS

  • Prof. Wim van der Heuvel and Dr. Tjeerd Tymstra, Northern Centre for Health Care Research,University of Groningen, Ant. Deusinglaan 1, 9713 AV, Groningen

UK

  • Dr. Priscilla Alderson, Social Science Research Unit,University of London,18 Woburn Square, London WS1H 0NS

Related publications

  • Ettorre, Elizabeth (1996): The new genetics discourse in Finland: Exploring Experts' views within Surveillance medicine. Suomen Kuntaliitto.
  • Ettorre, Elizabeth (1997): The complexities of genetic technologies: unintended consequences and responsible ethics. Sosiaalilääketieteellinen aikauslehti, 34: 257-267.
  • Santalahti, Päivi - Latikka, Anna-Maria - Ryynänen, Markku - Hemminki, Elina (1996): Women's Experiences of Prenatal Serum Screening. Birth 23:2, June.
  • Santalahti, Päivi - Aro, Arja R. - Hemminki, Elina - Helenius, Hans - Ryynänen, Markku (1998): On What Grounds Do Women Participate in Prenatal Screening? Prenatal Diagnosis, 18: 153 - 165.
  • Santalahti, Päivi - Hemminki, Elina - Latikka, Anna-Maria - Ryynänen, Markku (1998): Women's Decision-making in Prenatal Screening. Social Science and Medicine, Vol. 46, No. 8, pp 1067 - 1076.

Other related links:

Last updated by Michaela Laurén on 27.11.1998,

michaela.lauren@helsinki.fi