Biomedical research

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Getting Involved

Are you considering taking a test to predict or diagnose a genetic condition? Or have you received the results of a test confirming a prediction or a diagnosis of a genetic condition, and are deciding what to do next?


If any of these situations are similar to yours then please read on.

The information below has been divided into sections for separate topics, with relevant material for different groups and communities. Have a look to see which topics apply to you and click on the link to take you straight there.


Topic Areas
1. Informed consent - how to make the right choices about your own treatment DNA banking .
2. Gender and family - the different issues relevant to men, women and families when taking genetic tests
3. Cultural and biological diversity - concerns faced by groups from different social and cultural backgrounds
4. Access and benefit sharing - why it is worthwhile to take part in genetic research
5. More information- where can you find genetic services in your country



1. Informed consent

'Consent' means permission. Health professionals must have your permission to carry out any procedure.
You don't have to agree to anything that you don't want to or are not comfortable with. You are always entitled to ask for more information if there is anything you don't understand about your treatment.

In emergencies decisions may have to be made quickly, but in other procedures, such as genetic tests, it is usually ok to take as long as you need to make a decision.

Where the person undergoing a procedure is a minor, or has a mental impairment, a responsible adult or carer may need to make a decision on the person's behalf.

For more information click below on the topics you’re interested in. You will then be redirected to the EuroGenGuide where comprehensive answers can be found.

 

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2. Gender and family issues

Some diseases are inherited, which means they are passed on from parent to child. If you are concerned about this because there is a disease in your family, your doctor may be able to offer you a test to find out who is or might be affected.

Men and women sometimes have different attitudes to disease, and often men are more reluctant to seek medical treatment. Remember that, whether you are a man or a woman, your doctor is there to help you with any concerns you have.

If you are concerned about you or a family member being affected by a disease, you can contact your national genetics society about what tests and help are available.

For more information click below on the topics you’re interested in. You will then be redirected to the EuroGenGuide where comprehensive answers can be found.

 

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3. Issues for vulnerable groups

Health professionals are not allowed to carry out medical procedures without your permission, or consent.
Age, language difficulties, and some kinds of mental impairment might mean that sometimes it is difficult to understand information about a procedure, and so make it difficult for you to give consent to it.

If you are caring for somebody who may undergo a procedure, such as a test, you may have to give or refuse consent on their behalf, according to what would be best for them.

Sometimes these decisions can be difficult, so take as much time as you need and remember you are entitled to ask as many questions to your doctor as you like.

Cultural and Biological Diversity
All patients may feel vulnerable at times because of a medical condition. But some groups of people can be particularly vulnerable, especially when trying to access medical advice for genetic conditions, or when consenting to treatment or research.

Decisions can be difficult to make when they involve individuals who cannot make fully informed decisions about their own treatment and what is best for them.

Some of the major issues are explained below. They may help if you or a relative are involved in testing or research and want to know what it will mean to undergo one of these procedures. Click below on the topics you’re interested in. You will then be redirected to the EuroGenGuide.

 

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4. Benefits of participating in genetic research

Genetic research offers the possibility of developing cures for hundreds of serious and sometimes fatal diseases. This research depends on the continued donation of biological samples from affected people.

Participating in genetic research is not dangerous or painful!

If you participate in genetic research, you will be helping thousands of people in the future who are affected by disease. Sometimes researchers will offer benefits of different kinds to research participants, in recognition of their investment. For more information click below on the topics you’re interested in. You will then be redirected to the EuroGenGuide where comprehensive answers can be found.

 

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5. More information on genetic testing around the world


 Courtesy to Eurogenguide 

Website: Websteen