What are the possible benefits in taking part?
There are no direct benefits to you. Your sample and information may contribute to research that has a commercial benefit, however, you will not receive any financial return from research discoveries or developments or payment for participation in the A3BC.
Being part of this project may make you feel part of the larger effort working towards a cure for arthritis. This may help you and your family feel more positive towards your arthritis care. The findings from A3BC research can help us learn more about preventing RA/JIA/PsA/AS, and help find new treatments.
If you state that you wish to be contacted in the consent form, you will be contacted if any research shows important information about you, and you will be asked if you wish to know the results. The results may be important to you as they may provide:
- Information about risk of an inherited condition
- Information that might influence a decision to have children
In addition, if the research shows important information about your relatives, contact with your relatives about the research is encouraged. You may wish to do this yourself or ask the researchers to contact them on your behalf. Should you inform your relatives and they wish to know your results, you will be referred to expert genetic counselling to explain what the results mean for you and/or your family, and to support you as necessary. In order to verify any findings, it will be necessary to refer you for re-testing by genetic services, in an accredited laboratory outside this project.
What are the possible risks in taking part?
We do not expect there to be any major risks, side-effects or discomforts.
There is a possibility you may feel some discomfort during the blood test. Where possible, we will take a blood sample for this project at the same time as other blood tests are happening. We can use a cream to numb your skin before the blood sample is taken. It is possible some bruising may occur at the needle site. To minimise any issues, the samples will be taken by a health professional trained in collecting blood. In general, your blood sample will be taken at the same time as other tests being performed within your care, so not to cause you unnecessary time inconvenience.
Genes are a set of instructions inside all of the cells that make up our body. The A3BC will only perform limited gene testing, and only related to common arthritis and musculoskeletal conditions. Therefore, the possibility of a genetic finding is far less likely than if broader genetic testing were performed, and the impact of these findings is significantly less serious.
It is important to understand that results from genetic research will usually not indicate that the participant has a disease or disorder, or whether they will develop it. Research may only show that the participant has an increased risk of developing a disease or disorder. Even then, there is no guarantee that the participant will develop the condition or any indication of the likely age they might get the disease or how serious the disease might be.
You may learn information from their test result about inherited diseases or disorders that may affect others, such as brothers or sisters. You may be faced with the decision to make the family aware of the genetic information, however they may or may not wish to know this information. Learning about such results might affect you or your family emotionally. Therefore, if this situation arises, we will organise relevant health professional advice and care for you.
Any research results that could be of significance to you or your family will need to have the tests repeated and the results verified. This will involve having a blood sample taken and having it retested in an accredited testing laboratory (free of charge). Before a test is repeated to verify a research finding, you will be informed about the possible risks involved for you. This is especially important for individuals who are found to have a genetic mutation that is associated with an increased risk of developing a disease such as cancer or heart disease. Counselling may also be provided free of charge if it is appropriate.
Statutory or contractual duties may require you to disclose results of genetic tests or analysis to third parties (for example, insurance companies, employers, financial and educational institutions), particularly where results provide information about health prospects.
If the results of your genetic research are not available to you or you choose not to receive the results, then your future requests for insurance will not be affected by participating in this project. If you do obtain the results of your genetic research, you may then be obliged to disclose this on any future application for insurance or employment if requested.