From Voicing the Lifeworld: Parental Accounts of responsibility in genetic consultations for polycystic kidney disease by A. Clarke, S. Sarangi & K. Verrier-Jones

These issues also apply to other genetic diseases such as cystic fibrosis and Huntington's disease

Lifeworld - the immediate subjective experiences including individual, social, perceived and practical

PKD - An autosomal dominant inherited disease that is generally asymptomatic until middle age. Can manifest with chronic renal failure, or other issues with the blood vessels of the heart and brain. However it may also not be discovered until death or require management in youth (Highly variable manifestation).

Agency and Intentionality - in contrast to the relational perspective (focus on discussion/relationship not the conclusion), an agency and intentionality perspective of responsibility focuses on an individual's ability to exercise deliberate control over their lives by making decisions

Self Presentation - behaviour that modifies, creates or maintains an impression of ourselves in others

1. Some families increased communication and even re-connected after separation due to discussing genetic testing results

2. In case of diseases that are debilitating relatively early on some planning about care can be done. Another case of future planning is career choices by adolescents.

3. Some women were not diagnosed till pregnancy. caused some issues with reproductive ethics. Decisions are best made before a foetus or child is at risk.

4. Drugs can be used to manage some early symptoms such as hypertension

1. Mortgages, insurance etc.

2. Some people may exclude people potential partners. Causes problems amongst nuclear and extended families

3. Job discrimination with physical tests (Pilot, Army etc)

4. The whole process is very distressing (whether positive or negative) and some people choose not to deal with it.

5. Guilt from children who aren't affected. Separation from family based on results (both negative and positive).

1. people's views can change from initial diagnosis

2. some people think it is responsible to have children as long as they are monitored, while others think having a child at all is the hight of irresponsibility

3. some people have candid conversations with their children, others wait until adolescence/young adulthood, others don't discuss it at all (some misinformation in some cases)

4. this situation is very emotional, and people can have contradictory feelings/thoughts, while others resort to avoidance/ ambivalence