When a Project Participant dies

One of the more difficult challenges that DNA researchers face is the death of a project participant - or sponsor.  Here are a number of issues and my thoughts.  I welcome you to add yours in the comments section

1. Who "owns" the test ?

Sigh.  This is a critical aspect.  I believe the legal answer is simple -  the participant's estate.  On a practical basis, this is often addressed by whose email address is listed - as the email address owner(s) (usually) have full access to the test and its information.  It is quite simple for them to carry on the work already underway.

One variation of the answer comes when the participant's contact info is not identified or contact info for them isn't available.  This is often the situation when a sponsor (spouse, son, daughter, ... relative or friend) is listed.  In these cases, the answer in the first paragraph seems to be the best we can do - after substituting "Sponsor" for "Participant".

2. What if no one responds to the email address(es) listed with the kit?

The first approach would be for the administrator to try to contact the participant's family by phone or mail.

If the kit isn't in a project, then it would fall to the testing company staff to make the follow-up contact.  I have seen this done with FTDNA several times.  They ask that the researcher prepare a message and mail it to them and then FTDNA will mail it on to the addess of record for the kit.  (This is the situation that prompted me to write this blog)

Here's my suggestions to the researcher wanting to get a connection to the kit of a participant who passed away "about a year ago":

Write your letter to make contact, not to request an upgrade.  The best phrasing is probably to express sympathy first, then to express the thought that "Bill" must have been interested in learning more about his ancestry.  Now that he has passed on, is there someone else in the family who is carrying on the research?  If so, could they please connect you with that person, as you are interested in their family and how it may connect to your family..

Provide your contact info: email address, phone number and snail mail and let them decide how they want to respond.  Don't make much comment about the dna testing aspect - other than to acknowledge it as the connection that has brought you to them.

Only after you have made contact with someone in the family should you pursue upgrading the test, putting it in a project, getting shared access to it, ...

What if we can't make contact with the family by any technique?

This question has been a regular discussion topic for years.  A lot of time and energy has gone into discussion about the "ethics" of this - and whether the project administrator or another researcher has the right (or privilege) of continuing the research started by the testing already done.  In some cases, it may be obvious, due to working relationships and oft-stated intent.  In other cases, there may be no insights - and then, I don't have a simple answer - and will leave that to others.

What can I do to avoid this problem?

You can address this for your own kit(s) by making sure that others know your feeling and intentions.  You can advise your project administrator - who can put a comment with your kit or you can add a family member as a second contact - so that they will get your emails related to the kit.  (they can keep or destroy them as long as you are involved - but know to get involved when you no longer can)

As an administrator - you can encourage all of your project members to have a plan - and to make sure that either the project administrator knows what is desired - or to have arranged a second email address that pulls in your designated researcher.

If you are the sponsor for a test and the participant is "calling the shots" - then you should make sure that you know their wishes - when/if the need arises.

Hope this helps - and also hope that others will add their thoughts and suggestions.

Terry

When a Project Participant Dies

A quick count shows that six members of the Byrne project have died. There may be others among the many I never hear from, or the two whose email addresses no longer are valid.  But I haven't given much thought to the six in the belief (often confirmed when they notify me of the death) that the survivors continue to be interested. In several cases, the person who died was quite elderly when tested, and the test in fact was ordered by a younger relative. In short, it has not yet been a problem for me.

Paul