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mtDNA - Contributing Your Results to Research

Ethics Alert: Only the actual person tested may contribute their DNA test results to scientific research.

Important: This service is provided as is. FamilyTreeDNA customer service staff do not provide support for it. They will not be available to answer questions.

Disclaimer: Furthermore, in no event shall the staff and/or consultants of FamilyTreeDNA or Gene by Gene, Ltd., be liable for any direct, indirect, incidental, special, exemplary, or consequential damages (including, but not limited to, procurement of substitute goods or services; loss of use, data, or profits; or business interruption) however caused and on any theory of liability, whether or not in contract, strict liability, or tort (including negligence or otherwise) arising in any way out of the use of your results on the mtDNA Community website. Your decision to disclose your personal genomic information and all consequences of it are strictly yours.

What is the mtDNA full sequence scientific research program?

The mtDNA full sequence research program is a chance to help with science. It helps those who study maternal genetics to better explain our past and human migrations.

Who can contribute their mtDNA results to research? 

Customers who have taken the FamilyTreeDNA mtFull Sequence test can contribute their mtDNA results to research. 

I paid for a relative’s test, may I contribute their results to science?

No. Only the person tested has the right to contribute their results to science. Even if you paid for the test of a friend or relative, they need to be the ones to consent to the donation. This is in keeping with the policies governing the NCBI GenBank database.

Although we at FamilyTreeDNA appreciate your enthusiasm, we ask that you practice ethical testing and kit conservatorship. You may, of course, help explain the donation process to the person who tested.

Do you recommend that I donate my mtDNA results for scientific research?

No, it is not something that we recommend or endorse. However, FamilyTreeDNA customers have requested this service, and we do appreciate your enthusiasm. Therefore, FamilyTreeDNA has worked with population geneticists and NCBI Genbank staff to make this possible.

Why should I contribute my mtDNA results to research?

Donating your results to a study is an opportunity to help the scientific community advance research into our shared maternal origins. Contributing your results can also hold advantages for you, especially if you are interested in your haplogroup branch assignment. The more data the researchers have access to, the more likely they are to find more specific haplogroup branches that apply to you, and the more they can discover and learn about a haplogroup’s history and origins.

Thousands of FamilyTreeDNA customers have tested their mtFull Sequence. Their results are an important addition to the results collected directly by researchers. After publication, we can incorporate the new discoveries, provide better haplogroup descriptions, and provide refined haplogroup assignments to our customers, including you.

Is there a time limit on when I can agree to participate in research?

No, in general, there is no time limit for agreeing to participate in research.

Can I withdraw my participation in the research program?

If your results have not yet been provided to a study, yes, you may withdraw your agreement.

However, please note that when your results are included in a scientific study, your results are uploaded to the NCBI GenBank database as supporting data. Once they are added to the NCBI Genbank database, they may not be readily removed. To do so, you will need to contact NCBI Genbank staff.

In addition, although NCBI Genbank staff will make every effort to remove your results, the generated ID will remain in the database, and your results may become part of third-party websites beyond the control of FamilyTreeDNA, the original research team, and NCBI Genbank staff.

How do I contribute my mtDNA results to research?

If you have taken the Mitochondrial DNA Full Genomic Sequence test, you may agree to allow your results to be contributed to science. To do so:

  1. Sign in to your FamilyTreeDNA account.
  2. In the upper-right corner of your dashboard, in your "updates" section, click on the Complete mtDNA Survey link. 
  3. Complete the participation survey affirming that you are the person tested and that you have the right to contribute your results to science.

How much does it cost to take part in the program?

If you have results from the mtDNA Full Sequence test, donating them for scientific use is free.

What happens to my results after they are used in a study?

Once your results are used in a scientific study, that study will publish the Mitochondrial DNA Full Genomic Sequence test results in the form of a supporting data file. This includes the upload of results into the NCBI Genbank database. As part of the NCBI Genbank database, they may be accessed by anyone, including other researchers for future studies.

Will my results be included in the study immediately?

No. The timing of contributions being used in a study is dependent on the research needs of affiliated scientific groups and the scientific community at large.

How long does it take for the scientists to publish the study?

FamilyTreeDNA does not have information on the progress or publication date of a study in advance. The scientific team may complete some studies and publish them within weeks. However, most studies take months or over a year to complete. After the study is complete and submitted for publication, the researchers may not know the publication date until it is actually published.

If another scientific team publishes a study that goes beyond the scope of the study currently in progress, the scientists will discontinue the current study.

What results are used?

For the scientific study, mtFull Sequence test results and your answers to the participation survey are used.

However, after your results are included in a study and uploaded to the NCBI Genbank database, they may be linked to mtDNA Community and any additional information about your ancestry should you take part in that site.

What is the topic of the studies my results may be used for?

Study topics may include developments in the mitochondrial DNA (mtDNA) haplogroup tree and origins of haplogroups, histories of particular groups of people, research into medical conditions, and others. Many studies will combine multiple topics. For example, a study focusing on a particular population group may also expand the haplogroup tree adding to our understanding of some of its branches.

Will I be informed of new discoveries made with my results?

Although we show the Genbank NCBI ID when results are included in a published study, we do not provide an analysis or summary of the specific impact this study has on your results. If the mtDNA haplogroup tree is expanded as a result of the study, we will update all results in our database based on the new haplogroup tree.

Will I be informed of any studies that are published which use my results?

No. FamilyTreeDNA does not send notifications when results are sent to Genbank. However, should your results be used, we will display the NCBI Genbank ID. These are assigned on the mtDNA – Results page of your FamilyTreeDNA account. You will need to check this page periodically.

If I contribute my mtDNA results to research, will my personal information remain anonymous?

FamilyTreeDNA does not provide personal information to scientific research teams with your results beyond your answers in the participation survey.

However, it may be possible once your results are in the NCBI Genbank database for others to make a connection between your results there, your FamilyTreeDNA kit number displayed on group project webpages, your results in the mtDNA Community site, and additional information on third party sites.

 

 

 

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