title: When research knowledge is unwelcome: studying the health effects of in vitro fertilization.
abstract: OBJECTIVE
  To illustrate the complexity of setting up evaluative research when it is perceived to threaten professional and financial interests.
  
  
  METHODS
  A case study based on participatory observation of attempts to study the delivery and health consequences of in vitro fertilization (IVF). Two research projects were observed: one used well-baby clinic records and this project was completed; the other project aimed to use national data and record linkage to study the patterns of use of IVF, the IVF success rate, and the health effects on women and on children. This project could not be carried out as planned. The reasons for this were studied. Observations, documents and notes on discussions were analysed.
  
  
  RESULTS
  IVF clinicians were not interested in the second project until faced with a concrete request to provide data. Tactics to avoid providing data included asking for more information on the project, transferring the request from one person to another, and arguing against the project. The arguments used and conditions set by different clinics were similar and centred around data confidentiality and authorship of the anticipated research reports. This case illustrated features that occur when health care is evaluated by non-clinicians: quarrels over mandate and ownership; and conflicts between the different research traditions of clinicians and epidemiologists.
  
  
  CONCLUSIONS
  To facilitate evaluation by outsiders, new norms are needed and outside researchers need institutional back-up. Outside evaluation may need a determined push from health care funders and a cultural change within the clinical community itself.
authors.affiliation: Health Services Research Unit, National Research and Development Centre for Welfare and Health, PO Box 220, 00531 Helsinki, Finland.
authors.forename: Elina
authors.initials: E
authors.lastname: Hemminki
mesh_terms: D000328:Adult; D002675:Child, Preschool; D003219:Confidentiality; D005069:Evaluation Studies as Topic; D005260:Female; D005307:Fertilization in Vitro / Q000009:adverse effects / Q000706:statistics & numerical data*; D005387:Finland; D005500:Follow-Up Studies; D006297:Health Services Accessibility; D006302:Health Services Research; D006801:Humans; D012107:Research Design; D016896:Treatment Outcome