The main reasons people took the predictive test were to: eliminate uncertainty and be able to plan for the future; obtain information that would help their children make decisions; and establish their status so they could decide whether or not to have a family.

Everyone who took the predictive test talked to someone else before making their decision. All those who were married or in a de facto relationship talked to their partner but not everyone talked to all or even some of their children, partly because of the children’s age and partly to protect their children from undue anxiety.

5. The age at which people received their results ranged from 18 to 65. Three people were aged 18 or 20; 10 were aged 50 or over; only two of this group received a positive result. Most people thought that the current minimum age for testing is appropriate. Four thought 12 - 16 would be acceptable; three thought the age should be raised to 21 or 25.

6. Most people found it easy to get information on the predictive test through their GP or the Huntington's Disease Association (HDA), but some GPs either knew little about the disease or were unhelpful in finding and passing on information.

7. Most people were satisfied with the predictive testing process itself, although over half thought they had to wait too long for their result. Several wanted to be told more about the neurological test, including its purpose and how they had fared. A number felt uncomfortable with the personal questions asked by the psychologist. More explanation of the reasons for these questions may have helped.

8. With the exception of the first visit to the geneticist or genetic counsellor, most went to appointments on their own. The family member most likely to go along was a spouse or partner, a sister or friend.

9. Twenty-seven out of 33 people had been encouraged to find their own support to help them through predictive testing but only seven did so. Most found this useful. Two of the seven counted the support they received through the HDA as ongoing counselling.

10. Almost everyone who took the predictive test decided who would give them their result and their preferred person was their GP. All but three people were satisfied with the way in which they were told their result and all but two received a written report. The three who were dissatisfied guessed that their result was positive from the body language and expression of the health professional. Several people were under the impression that their results were confidential until they themselves opened the envelope and resented the fact the professionals knew in advance.

11. People’s expectations did not necessarily match the outcome of the predictive test. Thirteen people anticipated a positive result but only six received one. On the other hand, seven people expected a negative result but only two received one. Others had no expectations either way. Fourteen people received a positive result; 18 received a negative one and one person’s result was intermediate.

12. Ten people had no further contact with the genetics service once they received their result, including one with a positive result. Most other contacts were by telephone. The main source of support appeared to be the HDA. Only nine people had no contact with the association before or during the process, and the majority had contact with the association after receiving their result.

13. All those who received a positive result felt some sadness at the news, and most also felt grief, anger and acceptance. Nine felt some relief. Between six months and four years later, the level of acceptance had grown and the intensity of the feelings of sadness, anger and grief had diminished.

The 18 people who received a negative result received the news with relief and joy. Half were accepting and half experienced some guilt but very few felt any grief, anger or depression. The feelings of guilt disappeared over time.

14. In considering the effects of going through the predictive testing process most people agreed that: H D is only one obstacle in life; going through the testing process had encouraged them to think more deeply about things and appreciate life more; and they did not wish they had made different choices in life.

15. Six out of the 14 with a positive result thought about H D at least once a week; the other eight thought about it occasionally or when something happened to remind them about it. Those with a positive result worried more about the physical and emotional aspects of H D than about the financial implications. Most tried to keep healthy and active, both physically and mentally so they can cope with the disease when it develops.

Seven people with a positive result answered a question on whether or not they might have children. No consistent pattern emerged.

16. Family relationships in the immediate and wider family changed very little as a result of one person taking the test.

Seven of the 14 women who received a positive result identified minor changes in relationships in their immediate families.

• One family had become closer and more affectionate than before she took the test; one family had become less close.
• One family was less able to talk about things after testing than before.
• One family had become more supportive since the test.
• Two women said their families dwelt more on negatives now than in the past.
• One said her family was more prepared to show their feelings after she took the test.

Most of the families where there was a positive result accepted it and got on with their lives. A majority of the women said their family now appreciated each other more than in the past. Half thought family members had different priorities, made firmer decisions than in the past, took more risks and were more active. The group was divided on whether their family’s lifestyle had changed following the result - half said it had, half said it had not - and on whether they spent more time together or thought about things they will not be able to do.

17. Half of those who received a negative result said there had been no change at all in their immediate family relationships following the test. Others reported small changes which had generally enhanced rather than damaged family relationships, with a move towards greater openness and closeness and a reduction in family secrets.

18. The pattern in the wider family was similar to that in the immediate family. Two-thirds of the 14 women who received a positive result said there had been no change at all in their wider family relationships following the test. Where there was a change in relationships it tended to be small but positive.

• Three women said their wider family had become closer.
• One woman said her wider family could talk more easily since the testing; another said hers could talk less easily.
• Three women said they had become more careful since testing in talking with the wider family; one women had become less careful.

19. Ten out of 18 people with a negative result said there had been no change at all in their wider family relationships as a result of undertaking predictive testing. In others, changes tended to be small but positive, although two people were now more cautious about talking with other family members than before.

20. The reaction to taking the predictive test was overwhelmingly positive.

• Almost everyone agreed that it is better to know whether you are positive than not know.
• Only four people disagreed with the statement - ‘It’s certainly not the worst thing that can happen’. One of the four had received a positive result.
• Seven people, three positive, agreed that ‘The disease just makes me angry’.
• All but two people agreed that H D is ‘bad for the carer - it’s hard to sit back and watch’.
• Four people agreed that ‘the disease does not have a bearing on my life at the moment so I don’t see the point in thinking about it’. Eighteen people, ten with a positive result, disagreed with this statement;

21. The 33 family members included 19 from a family with a positive result; 12 from a family with a negative result and one from a family with an intermediate result. Fourteen were the spouse or partner of the person who took the test; nine were children; four were parents and six were siblings, aunts or in-laws.

Most family members knew what was involved in the testing process and all but two had discussed the test with their family member before they took it. Six would have liked more information about the testing process and about H D itself. Relatively few family members accompanied the person taking the test to appointments. Those who did generally found the experience helpful.

22. Twenty of the 33 were with their family member when they got their result. Most attended at their GP, but a third visited the geneticist’s office. Family members tended to be less satisfied with the way the result was given than those actually taking the predictive test.

23. Family members were more likely than those who took the test to anticipate a negative outcome - 12 did so, but half of them were wrong. Six of the eight family members who anticipated a positive result were correct.

24. Only four family members had contact with the genetics service once the result had been given - two were from a family with a positive result, two had a negative one. Three people would have liked to talk to someone about the result and what to expect.

Seven family members had contact with other counsellors, six after their family member received a positive result. The majority of family members also had contact with the association, including attending seminars, support groups and information evenings; contact with the social worker; attendance of children at camps; and receiving newsletters.

25. Family members of those who received a positive result felt sadness, grief and anger as well as some acceptance. The feelings of sadness, grief and anger declined over time and the level of acceptance rose. Thirteen of those in a family with a positive result are currently experiencing depression, compared with seven at the time the result was given.

Family members of those who received a negative result felt relief and joy when the result was given. Those feelings were still strong months and years later.

26. Most family members appreciated having to go through the predictive testing process and thought they had enough opportunity to make their views known. They realised that H D is only one obstacle in life. Very few wished they had made different choices in life.

Eleven of those in a family with a positive result said that their lives had changed as a result. Five thought about the disease every day and another three thought about it at least once a week, but the remainder thought about it less often.

27. Family members in positive families were concerned about the financial aspects of H D and what it will be like when their family member becomes dependent. A majority try to maintain their health so they can care for their family member as the disease develops.

28. Four members of families who received a positive result planned to have children anyway; four would like to have children but would screen them for the disease.

29. Family members noted very little change in their immediate or wider family relationships as a result of one person taking the test. Most described their immediate family as supportive, close and affectionate, able to talk and willing to deal with problems.