1. ESRC Genomics Network (archive)
  2. Gengage
  3. The Human Genre Project

Cesagen · Research

Genetics, Health and Identity

Angus Clarke, Srikant Sarangi

Start date

2002-04-01

Affiliated staff

Michael Arribas-Ayllon

Background

This project sought to understand how parents frame accounts about why they came to seek genetic testing for their children and/or how they decided to disclose (or not disclose) genetic information to their children. Taking a discursive approach, the research focussed on how parental accounts may be understood in terms of managing a balance (or imbalance) between notions of autonomy and responsibility.

Aims

The aims of the project were:

  • To examine how parents account for decisions to test their children;
  • To examine how parents account for disclosing or not disclosing genetic information to their children;
  • To understand how families manage and perform ‘genetic responsibility’ vis-à-vis decisions to test and/or disclose genetic risk;
  • To examine how professionals account for a balance between parental responsibility and children’s autonomy;
  • To understand how professionals interpret existing Codes of Professional Practice and manage ethical and moral dilemmas when addressing the broad range of familial concerns and family members’ understandings of genetics.

Methods

The research carried out was qualitative in nature taking a discursive approach. The primary methodology was that of interviews with professionals and parents.

Findings

From the sample of research interviews, it was found that three patterns of responsibility emerged: aligned, deferred and misaligned responsibility. While aligned and deferred constitute the default responsibility based on a consensual framework of ethical disclosure, misaligned responsibility emphasises how obstacles in open communication may not be in the best interests of the child – testing is delayed into adolescence or adulthood.

Professional codes of practice were examined in relation to the genetic testing of children. The work has shown that the ‘official’ codes are often elaborated from a chosen set of foundational principles. Practising professionals are then faced with the difficulty of relating formal codes to the contingencies of everyday practice; the formal codes can create difficulties for professionals who have to decide how these principles are to be applied in given circumstances.

Other important issues that have emerged include (1) how professionals come to a considered decision through a process of discussion with colleagues; (2) how professionals respond to a difference of view between themselves and the patient or client; especially (3) when the patient is a child and the difference of view is with the parents – to what extent can professionals override decisions made by parents on behalf of their children? In addition, (4) there may be tensions concerning the process of taking consent and respecting confidentiality, where professionals feel that best practice – what they should do – is either unclear, or is being infringed by researchers.

Further information

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