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Participating in Genomics Research

Why participate in genomics research?

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 genomic 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 or risk from participation.

What should I consider when thinking about participating?

What is the purpose of the study?

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.

How much effort will I be expected to commit?

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.

What healthcare will I receive as part of the study?

The primary purpose of research studies is to advance scientific knowledge, although you may receive some care as part of your participation. To receive clinical care, you should consult your regular physician.

How will participating affect my family?

This is one consideration that is especially important to consider for genomics research since genomic 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. For example, genomic testing results could tell you information about disease risk, ancestry, and family relationships. 

Is it safe to participate in genomics research?

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.

How will my privacy be protected?

Some genomics research is on 'de-identified' samples, meaning that information that identifies you, like your name and date of birth, is separated from your  sample to protect your privacy. In other studies, scientists may need sensitive personal information to conduct their research; in that case, researchers will describe how they will protect that information during the consent process. Additionally, all NIH-funded studies that collect identifiable information are protected by Certficates of Confidentiality, or CoCs. A researcher whose study is covered by a CoC is prohibited from disclosing identifiable information about their research participants in legal proceedings, such as in the case of a subpoena.

There is also a Federal law called the Health Insurance Portability and Accountability Act (HIPAA) that restricts the sharing of medical information unless you have provided consent.

Might I be discriminated against as a result of information about my genome being revealed?  

In addition to taking steps to protect the privacy of your genetic information, there is a Federal law called the Genetic Information Nondiscrimination Act (GINA) that prohibits employers and health insurers from discriminating you on the basis of your genetic information. Another Federal law called the Affordable Care Act (ACA) prevents health insurers from denying insurance to people with pre-existing conditions, including genetic conditions.

How do I get involved?

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:

ClinicalTrials.gov 

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.

GenomeConnect 

GenomeConnect is a unique patient registry that allows you to share your genetic and health information with researchers, clinicians, and others. 

Click here for studies being conducted by NHGRI researchers.

ResearchMatch

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

UK Clinical Trials Gateway
This database of clinical trials in the United Kingdom (UK) is curated by the UK National Health Service 

International Clinical Trials Registry Platform 

The World Health Organization (WHO) manages this database that lists clinical trials in countries all around the world

Additional Resources

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.

Last Updated: January 10, 2018

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Participación en una investigación genómica