One of the most promising areas of scientific research today is also one of the most sensitive
privacy issues that genealogists are faced with when gathering information about our ancestors.
Shared genetic information may seem to be an abstract, academic concept when applied to the dead,
but it has a very real and imposing significance for the living.
In a late 1999 issue of the online journal, RootsWeb Review, a subscriber wrote:
The article about Telethon 1999 (Vol. 4, No. 47, 17 November 1999) where FranceGenWeb and many WorldGenWeb countries "support charitable causes such as fighting genetic diseases," hit a focal point in my life. I have one of those "genetic diseases" called Polycystic Kidney Disease (PKD), which was passed to me through my father, Paul Graham. Because my grandmother, Ella Dora (Howerton) Graham, died at the age of 35 years when my father was only five years old, I believe she died of PKD, but there is no death record for her. She died in 1921, but the "country doctor" didn't even know what caused her to die. Now genealogy takes on a whole new meaning for me. Now it is not just "where and when did they die," but "what was the cause of death?" I belong to a PKD support group online and one of the latest subjects was "tracing PKD in your family." Although I have been doing genealogical research for more than 25 years and have two books under my belt, trying to trace health problems in the family is even harder.Please visit RootsWeb's main Web page at http://www.rootsweb.com/.
Looking for cousins with whom I've lost contact with is critical because of the need to alert them to the problem. PKD is passed on through a dominant gene, so every child of a person with PKD has a 50/50 chance of having the disease. [...]
After tracing the family health history and alerting cousins about PKD, the next step is to campaign for more research. The Polycystic Kidney Research Foundation has been selected as one of five charities that the "Motley Fools" will support in the year 2000. In addition to funding, this means that PKD will get some of the visibility sorely needed to get the word out and stop the suffering alone. Patients, families, and medical professionals need to know there is hope.