college, your work - or being out of work. We would like to know about your aims
and hopes, the things you enjoy doing, and parts of your life you might like to change.
The research also asks what you think about the new genetics, gene tests and antenatal
screening. If you don't know much about genetics and screening, we still hope that
you will talk to us. We are not looking for expert answers, it is your own views that
would help our research.
These topic themes, and not set questions, were the basis of the interviews, and also covered
what interviewees might like to change about themselves (if anything) and about society, and
their views on being or becoming a partner and a parent, which they often introduced when
talking earlier about their hopes. If they seemed willing, they were asked about screening for
Down’s syndrome. The leaflet continued:
“What is the research for?
1.To report a wide range of views from around Europe;
2. To increase informed public debate about screening;
3.To make sure that the views of people who are most directly concerned are more widely
known;
4. To inform those who plan and provide health services around Europe about the kinds of
services people want to have.
What does helping with the research involve?
We invite you to take part in an interview or a small group session. We would meet for about
an hour, at your home or somewhere else that suits you. If you agree, we would tape-record
the session. We will 'phone each person one week after their interview, to see if there is
anything more they wish to talk about. We will send a short report about the research later
this year to everyone who helps us.
Research and your rights
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It is for you to decide if you want to talk to us. You do not have to say 'yes'.
If you do say 'yes', you do not have to do the whole interview.
We could stop when you want to, or have a break.
If you do not want to answer some of the questions you can just say `pass'.
Before you decide if you will help us, you might like to talk about this project with
your parents or with a friend.
We will keep tapes and notes of the interviews in a safe, locked place.
When we talk about the research and write reports, we always change people's names,
to keep their views anonymous.
We would not talk to anyone you know about what you have said, unless you talk
about the risk of someone being harmed. If so, we would talk with you first about
what could be done to help.”
There were details about the sponsor and the researchers and how to contact us. Page
4 added:
“Lots of research is done with people with Down's syndrome.
What is new about this project?
1. Most research about people with Down's sees them as patients and is about their health
treatment. This research is about you as a person and about your own views on your life.