ABSTRACT
This article synthesises recent research examining how families live with genetic risk and the processes of genetic decision-making and disclosure among family members who have been or are at risk of transmitting a familial genetic condition. Its aim is to generate substantive theory that can inform our understanding of the interactional processes at work in the distribution of mutual knowledge and awareness of genetic risk in families. The article is structured around three interrelated concepts. Kinscape refers to the constellation of relations and relatedness that are recognised practically; timescape to the multiple temporal frames of social relations and their transformation and genescape to the constellation of knowledge, belief and practice surrounding genetic inheritance. All three concepts are simultaneously natural and cultural. Their intersections create the conditions of kinship and genetics.
Subject(s)
Genetic Predisposition to Disease/psychology , Health Knowledge, Attitudes, Practice , Decision Making , Family Relations , Humans , Risk Factors , Socioeconomic Factors , Sociology, Medical , Time FactorsABSTRACT
Testing for carrier status for various genetic conditions often takes place during adolescence or young adulthood. This paper aims to add to the discussion of when is the best time to test through an examination of how the law on medical treatment of children appears to be used in practice and how a careful examination of legal rulings might shed light upon best practice in this area. Our focus is on the Gillick ruling (Gillick v West Norfolk and Wisbech Area Health Authority 1986), which dealt with consent and confidentiality with respect to the provision of contraceptive advice to under 16-year-olds, but which has become a general benchmark for consent to medical treatment within UK law. In addition, we draw upon data from a qualitative research study which indicates potential problems with certain practices in respect of the influence of the Gillick ruling on carrier testing procedures. We present evidence that in at least some instances, adolescents have reduced capacity to grasp fully the implications of carrier test results. In the light of our findings we make recommendations for practice concerning the testing of children and young persons.
Subject(s)
Genetic Carrier Screening , Genetic Testing/statistics & numerical data , Adolescent , Adult , Comprehension , Confidentiality , Female , Genetic Testing/legislation & jurisprudence , Humans , Informed Consent , Male , Pregnancy , PubertyABSTRACT
Genetic information about one individual often has medical and reproductive implications for that individual's relatives. There is a debate about whether policy on transmitting genetic information within the family should change to reflect this shared aspect of genetic information. Even if laws on medical confidentiality remain unchanged, there still remains the question of professional practice and whether, to what extent and by what means professionals should encourage disclosure within a family. The debate so far has tended to focus on who has a right to genetic information, or has a right to decline genetic information, frequently drawing on the notion of individual autonomy. There are significant divergences within this debate, and difficulties with the use of autonomy in this context have been noted. This paper draws on theoretical considerations as well as on qualitative empirical data to show that shifting from talk of autonomy to talk of integrity will greatly enrich and illuminate the issues. It becomes possible to gain deeper insights into the ethical significance of the timing and the manner of such communication, the character of recipients of knowledge, and the nuanced nature of communication and different levels of understanding within a family.
