1. ¹Institute of Medical Genetics, University Hospital of Wales, Heath Park, Cardiff CF14 4XN, UK
2. ²Centre for Family Research, Free School Lane, Cambridge CB2 3RF, UK
3. ³Regional Genetic Service and Academic Unit of Medical Genetics, St Mary's Hospital, Hathersage Rd, Manchester M13 0JH, UK
4. ⁴Public Health Genetics (on behalf of Genetic Health Services Victoria), Murdoch Children's Research Institute, Victoria, Australia
5. ⁵Family Cancer Centre, Peter MacCallum Cancer institute, Victoria 8006, Australia
6. ⁶Department of Medical Genetics, University of Aberdeen, School of Medicine, Polwarth Building, Aberdeen AB25 2ZD, UK
7. ⁷CESAGen, Cardiff School of Social Sciences, Cardiff University, 6 Museum Place, Cardiff, UK
8. ⁸Department of Public Health, University of Aberdeen, School of Medicine, Polwarth Building, Aberdeen AB25 2ZD, UK
9. ⁹Wessex Clinical Genetics Service, The Princess Anne Hospital, Coxford Rd., Southampton SO16 5YA, UK
10. ¹⁰Department of Medical Genetics, Belfast City Hospital Trust, Belfast BT9 7AB, UK
11. ¹¹North Trent Clinical Genetics Service, Blue Wing, Sheffield Children's NHS Trust, Western Bank, Sheffield S10 2TH, UK
12. ¹²Department of Clinical Genetics, Churchill Hospital, Old Road, Oxford OX3 7LJ, UK

Correspondence: Professor A Clarke, Department of Medical Genetics, University Hospital of Wales, Health Park, Cardiff CF14 4XN, UK. Tel: +44 2920 744 057; Fax: +44 2920 747 603; E-mail: clarkeAJ@Cardiff.ac.uk.

¹³These authors contributed equally to this work.

Received 23 September 2004; Revised 20 January 2005; Accepted 21 January 2005; Published online 16 March 2005.

Abstract

Patients attending genetic clinics are often the main gatekeepers of information for other family members. There has been much debate about the circumstances under which professionals may have an obligation, or may be permitted, to pass on personal genetic information about their clients but without their consent to other family members. We report findings from the first prospective study investigating the frequency with which genetics professionals become concerned about the failure of clients to pass on such information to their relatives. In all, 12 UK and two Australian regional genetic services reported such cases over 12 months, including details of actions taken by professionals in response to the clients' failure to disclose information. A total of 65 cases of nondisclosure were reported, representing <1% of the genetic clinic consultations in the collaborating centres during the study period. These included 39 cases of the failure of parents not passing full information to their adult offspring, 22 cases where siblings or other relatives were not given information and four cases where information was withheld from partners – including former and prospective partners. Professionals reported clients' reasons for withholding information as complex, more often citing concern and the desire to shield relatives from distress rather than poor family relationships. In most cases, the professionals took further steps to persuade their clients to make a disclosure but in no instance did the professional force a disclosure without the client's consent.