Project "Privacy/Consent" policy

The rationale for the J2 Y-DNA project privacy/copyright policy is from a scientific perspective. 
It's there for one primary reason:
     1) Scientific ethics


All project members have the right to choose whether their haplotype is in the "public domain" or not.  Allowing each person choice over what happens to their haplotype is also in accordance with the ethical standards of "informed consent" which is essential in all kinds of scientific research involving people. Some of our project members don't want their haplotypes copied/used without their knowledge/permission, and it is for this reason that we ask that project members not copy haplotypes without the permission of the person it belongs to.  As we ask this of all members, this protects each members own haplotype as well, and allows them better control of what happens to their own haplotype.

What is "informed consent"?

In the academic biological sciences, any research involving animals (including Homo sapiens) requires approval from ethics committees.

Of great importance, is for all people involved in research (be it medical or otherwise) to give informed consent. I feel that it would be inappropriate for the J2 Y-DNA project to not adhere to the same ethical standards that apply in Academic research. It would be unethical for a researcher to get consent from a participant for a specific type of research, but then do a different type of research. For example, it is unethical for a geneticist to tell participants that their DNA will be used for research in (for example) cardiac conditions, but then use their DNA to instead study (for example) AIDS resistance. If the researcher wanted to use the samples collected for both purposes, then the participants need to consent to their DNA being used for both purposes.

Within the context of research into human Y-DNA haplogroups, the open publishing of results on the internet presents some ethical issues that have not been adequately considered by the genetic genealogy community.

If a person has granted permission for their DNA to be used for one purpose (eg. Genealogical research), is it ethical to use their DNA results for a different purpose (eg. Scientific research), without first asking whether they give consent for this additional purpose?

Within the context of genetic genealogy, (and Y-DNA anthropology research) full proper Informed consent would require full disclosure to all participants that the publishing of their results in public would effectively make their haplotypes public domain information, and that their results could be copied and used by anyone, without their knowledge. We feel that in the context of scientific research, it would be unethical to obligate participants to granting unlimited usage of their haplotype results to the general public.

We realise that there are many genealogists that are very comfortable with granting unlimited usage of their results to everyone, however we respect that not all people are comfortable with this. We therefore allow our members to have choice regarding whether their haplotype is viewable to the general public or not, and thus allow them to retain whatever level of control they would like over the usage of their haplotype.
This policy is all about letting each individual member having control over their own personal results, which represents part of their own personal body (not at all about the project controlling, or restricting the flow of scientific information).

Members can now select one of three privacy options. These three options are as below:

  •  I give permission to the Scientific J2 Y-DNA project to use my Y-DNA results in its data analyses. I also give the J2 Y-DNA project permission to display my haplotype in the public area of the site, as well as the members only area.
I understand that by consenting to have my haplotype in the public area of the web site that my haplotype is effectively in the public domain, and I am permitting third parties to view my haplotype, and some may copy and use my haplotype for their own purposes without my knowledge. I hold the Scientific J2 Y-DNA harmless for all consequences of having my haplotype displayed in the public domain. I understand that the J2 Y-DNA project will not display any of my personal details (name, e-mail address etc) on its website, nor will it disclose any of my personal details to any third party without my full permission.
  •  I give permission to the Scientific J2 Y-DNA project to use my Y-DNA results in its data analyses. I also give the J2 Y-DNA project permission to display my haplotype only in its members only area .
I understand that the J2 Y-DNA project will in return promise to not display my haplotype details in the public domain without my permission. I understand that the only individuals that will view my haplotype are the project administrators and the members whom have agreed to respect my wishes and not copy haplotypes in the members area. In the event that another project member breaks their word, I hold the Scientific J2-Y-DNA project harmless from blame, and all blame is held by that other project member. I understand that the J2 Y-DNA project will not display any of my personal details (name, e-mail address etc) on its website, nor will it disclose my personal details to any third party without my full permission.
  •  I give permission to the Scientific J2 Y-DNA project to use my Y-DNA results in its data analyses. I do not give the J2 Y-DNA project permission to display my haplotype on its website.
I understand that the J2 Y-DNA project will in return promise to not display my haplotype details in either the members area or the public domain without my permission . I understand that the J2 Y-DNA project will not display any of my personal details (name, e-mail address etc) on its website, nor will it disclose my personal details to any third party without my full permission.

Link to informed consent in Medical research

Link to Informed consent in Psychological research

Link to the Genographic projects Ethics policy