Participating in genomics research is an opportunity to support scientific exploration of the genome and to help NIH in its mission to understand, prevent, detect and better treat disease. Often, only through the recruitment of large numbers of participants from different populations can major scientific advances be achieved. In some cases, research participants may also gain some individual benefit, such as diagnosis of a disease or access to a treatment in development. A wide range of genetic research studies need participants, each with different levels of involvement, and it is important to understand the scientific purpose of any study and any potential personal benefit from participation.
The main reason to participate is to advance science, so make sure you know what the study is designed to investigate and that it's something you want to help support.
This very much varies from study to study. For any study you are considering, it is important that you understand what you will need to do to be a participant, and how much time it will take.
As a study participant, you may receive some care as part of the research but only in accordance with the protocols of the research. To receive clinical care, you should consult your regular physician.
This is one consideration that is especially important to consider for genetics research since genetic information is hereditary and may reveal information about relatives. Consider talking to your family members about your choice to participate in research. Also ask the researcher what information might be discovered in the course of the study and whether information might be returned to you or your family members.
Research participants are protected by a set of federal regulations, known as the Common Rule, which ensures that such research is conducted ethically. The Common Rule requires that researchers provide research participants with complete information about the study, and that they voluntarily consent to participation. The research team must inform you of any possible risks or benefits of participating in the study. You can also stop participating in the study at any time if you wish to do so. The Common Rule also ensures that research projects conducted by the NIH and studies funded by the NIH are reviewed by an Institutional Review Board comprised of scientists, bioethicists, and members of the public, to ensure the study is conducted ethically and that any risk to participants is minimized.
Some genetics research is on 'de-identified' samples, meaning that information that identifies you, like your name and date of birth, is separated from your genetic sample to protect your privacy. In addition, NIH follows a policy where sensitive personal information is only provided to researchers pursuing genomics investigations. You should make sure you understand how your sample or genetic information will be protected.
In addition to taking steps to protect the privacy of your genetic information, there is a federal law called the Genetic Information Nondiscrimination Act ] that prohibits employers and issuers of health insurance from discriminating you on the basis of your genetic information.
A key step to participating in research is identifying studies for which you are eligible. Below are resources providing detailed information on research involving research participants:
GenomeConnect is a unique patient registry that allows you to share your genetic and health information with researchers, clinicians, and others.
Around the Nation and Worldwide
This is a searchable registry and results database of federally and privately supported clinical trials conducted in the United States and around the world. ClinicalTrials.gov gives you information about a trial's purpose, who may participate, locations, and phone numbers for more details. This information should be used in conjunction with advice from health care professionals. [Tips for finding trials on ClinicalTrials.gov]
NIH Clinical Research Studies
At the NIH Clinical Center in Bethesda, Maryland
The NIH maintains an online database of clinical research studies taking place at its Clinical Center, which is located on the NIH campus in Bethesda, Maryland. Studies are conducted by most of the institutes and centers across the NIH. The Clinical Center hosts a wide range of studies from rare diseases to chronic health conditions, as well as studies for healthy volunteers. Visitors can search by diagnosis, sign, symptom or other key words.
Click here for studies being conducted by NHGRI researchers.
Undiagnosed Diseases Program at NIH
This a trans-National Institutes of Health (NIH) initiative that focuses on the most puzzling medical cases referred to the NIH Clinical Center in Bethesda, Md. A longstanding medical condition that eludes diagnosis by a referring physician can be considered undiagnosed and may be of interest to this clinical research program. Of the total number of cases that are referred to this program, only a limited number will be invited to proceed in the study following careful application review by the program's medical team. If you are interested in participating in this clinical research program, discuss the option with your primary physician or health-care. Patients must be referred by a physician or health-care provider. Information specialists at the Clinical Center's Patient Recruitment Call Center (1-866-444-8806) can provide more information about eligibility and what kinds of medical information referring physicians must submit for review by the programs medical team. You or your health-care provider can call.
This cooperative, international research effort is funded by the NIH and seeks to determine the genetic cause(s) of Mendelian disorders. The CMG includes three sequencing centers: the Baylor-Johns Hopkins CMG, the University of Washington CMG and the Yale CMG. The CMG only accepts samples referred by a health care provider or researcher, and doesn't accept self or family referrals. If you are interested in information about sample submission, please ask your health care provider to contact us at firstname.lastname@example.org.
The CSER consortium represents a diverse collection of projects investigating the application of genome-scale sequencing in different clinical. Check with the participating research institutions for opportunities to participate in their research studies.
This is an NIH-funded initiative to connect 1) people who are trying to find research studies, and 2) researchers seeking people to participate in their studies. It is a free, secure registry to make it easier for the public to volunteer and to become involved in clinical research studies that contribute to improved health in the future
Clinical Trials for Genetics
This database of clinical trials is curated by the National Health Service (UK) and is searchable for clinical trials in various countries around the world.
NIH is not responsible for the availability or content of these external sites, nor does NIH endorse, warrant or guarantee the products, services or information described or offered at these other Internet sites.
Posted: May 5, 2015