Can I participate in Genome Database? How can I do it?
It is possible to participate in Genome Database voluntarily, you will need to sign informed consent, donate blood and complete questionnaire about heath and heredity information. If you would like to voluntarily donate blood for research, please, contact our personnel through email: firstname.lastname@example.org, or by phone +371 67473083 (during working hours). Personnel will inform you about enrolment process and appoint the time and place for recruitment visit that is more appropriate to you (currently enrolment is carried out only in Riga).
How recruitment process is carried out?During enrolment specifically trained medical personnel will introduce aims of Genome Database and explain recruitment procedures, processing and maintenance of samples and data and how the collected samples can be used in research. After your voluntarily agreement, medical personnel will help you to fill informed consent form. Certified nurse will collect samples of your venous blood, just in regular venepuncture process in blood tests (three blood tubes will be collected). Trained personnel will interview you about questions related to your health, for example, gender, age, diseases you or your blood relatives have suffered.
You will be recruited to Genome Database.
What will be investigated in my sample?
Samples from Genome Database of Latvian population can be used in different research studies that investigate human health and heredity. The simple biomarkers can be investigated for example, cholesterol in blood derived serum, or genetic factors like gene mutations in DNA isolated from white blood cells. Research can differ but samples can be accessed only by the research studies that have approved by Central Medical Ethics Committee and have goal of human health improvement.
Can I limit research range in my sample?
If you would like to limit research carried out with your sample you need to state this in informed consent 4. Paragraph: I would like to limit research in my sample, with specific explanation added, for example: “I do not want Alcheimer disease studied in my sample” or “I do not want my sample to be studied in context of biological weapons”, or other statement that you do not find appropriate research of your sample.
What is benefit for me to participate?
If you participate in framework of specific research project, where sample is investigated in context with therapy or other factors that can immediately improve your condition, you will directly benefit from the participation. If you participate voluntarily or in research where there is no immediate benefit your participation helps scientific progress and could help to improve health care and benefit many other people in future, potentially including your children and next generations.
If any alterations in my genome will be discovered will I be informed?
It depends what have you stated in your informed consent form. If you have stated that you do not wish to be contacted your wish will be respected and results will not be reported. If during research important factors that might affect your health and intervention could benefit your condition, the results will be reported to you if you have stated that in informed consent form. The reporting will be performed with proportional effort taking in to account practical limitations. If you want results reported back to you please provide correct personal ID and mailing address in informed consent, usually reporting is performed via mail.
How can I learn about research results of my sample?
You need to write application to the State population genome registry, The Centre of Disease Prevention and Control, Duntes Str. 22, k-5, Riga, Latvia, LV1005. In the application you need to state the you want to learn about the research that has been performed with your sample, as well as your name, surname, personal ID number and address of residence in time of enrolment.
The availability of research results depends on whether your sample have been included in any study project. The sample could be used for the first time even after 10 years from recruitment. The participation in Genome Database of Latvian population is voluntarily and mostly benefits society, science and studies of human health. If your sample has been studied, you can learn about the results through application to Genome registry, if the research on your sample have been performed based on the application you will be informed. If you plan to learn about the results of the study it is crucial to save your copy of informed consent.
When research results will be reported back to me?
This depends when your sample will be used in study project, it could be after a year or even after 10 years after enrolment. The enrolment in Genome Database is voluntarily and mostly gives benefit to society, science and research of human health. If the samples donated by you will be studied you can inquire about research results via written application to State population genome registry, and if your sample would be studied you will be informed about it. If you plan to inquire about research results, please, fill your personal ID number and mailing address very carefully and save your informed consent form.
Is it safe to participate in Genome database?
Blood for genetic material isolation is obtained via venipucture just as during regular blood tests, the procedure is performed with sterile equipment in appropriate premises and does not endanger health. Your privacy is secured by Human genome research act of the Republic of Latvia that is one of the firmest legal acts in this area in the world. All obtained samples and information is coded and scientists that will study samples will not have access to your personal data, this information will be stored in State population genome registry. The information from this registry could be obtained only if you will want to inquire about your research results.