Risk Perception and Decision-making Processes in Candidates for Genetic Testing for Huntington’s Disease: An Interpretative Phenomenological Analysis

  title={Risk Perception and Decision-making Processes in Candidates for Genetic Testing for Huntington’s Disease: An Interpretative Phenomenological Analysis},
  author={Jonathan A. Smith and Susan Michie and Mike Stephenson and Oliver W J Quarrell},
  journal={Journal of Health Psychology},
  pages={131 - 144}
This study is concerned with how candidates for pre-symptomatic genetic testing for Huntington’s disease represent their risk status and how they describe the process involved in their deciding whether or not to take the test. Transcripts of semi-structured interviews with five women offered testing were analysed by interpretative phenomenological analysis (IPA). The women find it difficult to conceptualize their current risk, and express reasons for a perceived enhanced or diminished risk… 
Genetic Testing for Huntington's Disease: How Is the Decision Taken?
Decisions about genetic testing for Huntington's disease (HD) were explored by employing semistructured interviews with at-risk persons and participant narratives suggested that the conventional construction of a genetic-test decision as an opportunity for choice may be inadequate.
Doing the right thing for one's children: deciding whether to take the genetic test for Huntington's disease as a moral dilemma
A key factor for participants was to do the right thing for their children, which presents a moral dilemma to participants and can direct them either towards or away from testing.
The use of heuristics in genetic testing decision-making: A qualitative interview study
It is illustrated the importance of genetic counselors and medical professionals being aware of heuristics and the individual manner in which they might be applied in the context of genetic testing decision-making, particularly in the complex context of inherited cancer predisposition.
Genetic testing for Huntington’s disease: A thematic analysis of online support community messages
This study investigates how genetic testing is discussed within health forums and finds Forums can reduce the uncertainty of ambiguous symptoms and provide ongoing personalised support before, during and after a genetic test.
Perceptions of discrimination among persons who have undergone predictive testing for Huntington's disease
  • E. Penziner, Janet K. Williams, Jane S. Paulsen
  • Medicine
    American journal of medical genetics. Part B, Neuropsychiatric genetics : the official publication of the International Society of Psychiatric Genetics
  • 2008
Investigation of perceptions of genetic stigmatization and discrimination among persons who completed predictive testing for Huntington's disease found discrimination concerns remain high in this sample and point to the need to determine the extent and scope of the problem.
“Holding your breath”: Interviews with young people who have undergone predictive genetic testing for Huntington disease
This work aimed to explore the experience of predictive genetic testing for HD from the young person's perspective and to document the impact that testing has upon various aspects of young people's lives.
Making the Decision to Participate in Predictive Genetic Testing for Arrhythmogenic Right Ventricular Cardiomyopathy
This study found that at risk individuals juxtapose scientific knowledge against their experiential knowledge and the six identified factors in order to make the decision to participate in genetic testing.
Making sense of risk diagnosis in case of prenatal and reproductive genetic counselling for neuromuscular diseases
The findings suggest the significance of the experience of genetic risk and the implications for the support of individuals and their family after the conclusion of the genetic counselling intervention.
Evaluating a genetic counseling narrative group session for people who have tested positive for the Huntington's disease expansion: An interpretative phenomenological analysis
While most participants were positive about the session, the final theme presented the voices of two participants for whom the groups were poorly timed, it is recommended other centers consider offering people impacted by HD similar sessions.


Understanding responses to predictive genetic testing: A grounded theory approach
A pilot study using a qualitative methodology was conducted with members of families at risk for the late-onset genetic disease, familial adenomatous polyposis, finding that when genetic testing indicated an extremely low risk of developing the disease, there was a desire to continue regular bowel screening, even though it was experienced as extremely aversive.
The motivation of at‐risk individuals and their partners in deciding for or against predictive testing for Huntington's disease
‘Making decisions concerning children’ and to a larger extent ‘informing children about their risk status’ are important factors in deciding in favour of the test.
Predictive testing for Huntington disease in Canada: the experience of those receiving an increased risk.
The experience of 4 persons who received an increased risk for developing Huntington disease are described to illustrate recurrent and common themes which have emerged during counselling, and to highlight the strategies of coping with this information.
Psychological consequences of predictive genetic testing: a systematic review
Testing protocols should include a pre-test assessment of emotional state so that post-test counselling can be targeted at those more distressed before testing, and those undergoing predictive genetic testing do not experience adverse psychological consequences.
On attitudes and appreciation 6 months after predictive DNA testing for Huntington disease in the Dutch program.
Study of 6-month follow-up attitudes of 63 individuals, after predictive testing for Huntington disease (HD), suggests that the perpetuation of the disease is likely to be sustained.
Self-selection in predictive testing for Huntington's disease.
It is concluded that the Tested persons are psychologically selected for favorable responses to genetic testing.
Presymptomatic DNA-testing for Huntington disease: pretest attitudes and expectations of applicants and their partners in the Dutch program.
It is proposed that the applicants at risk for Huntington disease and their partners in the Dutch presymptomatic DNA-testing program form a self-selected group, based on their expectation that they will not be emotionally affected by either result.
Lay constructions of genetic risk
One aspect of research on women (mothers and daughters) in families with Duchenne Muscular Dystrophy (Duchenne), a genetically transmitted disorder, is reported, where there are fundamental differences between medical and lay understandings of the statistical issues involved.
Genetic Counseling: Clinical Geneticists' Views
Analysis of transcribed interviews revealed four key themes, with contradictory aspects, of clinical geneticists' beliefs and thoughts about their practice, which have implications for the nature of the professional role, the development of training required for it, and the evaluation of genetic counseling.
Social system responses to Huntington disease.
Three illustrative issues--patient preselection, the denial of symptom onset, and suicide induction--are discussed from the vantage point of family systems thinking.