19 October 2011

Research, Proof Standards, and DNA Testing

As genealogists, we devote most of our reading time to genealogical and historical sources. We can forget how much we can learn from other disciplines. With the use of DNA testing in genealogy, science and medical sources are of interest even to genealogists who didn't devour Scientific American and enjoy biology class as a teenager.

On the discussion list of the International Society of Genetic Genealogists (ISOGG), Debbie Kennett, author of DNA and Social Networking: A Guide to Genealogy in the Twenty-First Century, posted about the book, Testing Treatments: Better Research for Better Health Care, second edition, by Imogen Evans, Hazel Thornton, Iain Chalmers, and Paul Glasziou (London: Pinter and Martin Ltd., 2011). The foreword of the book is written by Ben Goldacre, author of the book Bad Science (New York: Faber and Faber, 2010; several other editons and publishers also available) and his blog of the same name.

The Testing Treatments website has links for ordering the print version of the book. It includes a link allowing the full version to be downloaded as a PDF. After perusing the PDF, I expect to order the print version I can hold in my hands for a leisurely read on the sofa.

How does this relate to genealogy? Through common research processes and my interest in using DNA for genealogical purposes.

In genealogy, we often discuss the links between genealogical and historical research. This book shows similarities between all kinds of research:
  • The very first sentence of the foreword includes a question that is critical to genealogical research as well as the subject of the book and any other kind of research:
    Medicine shouldn't be about authority, and the most important question anyone can ask on any claim is simple: ‘how do you know?’
  • Throughout the book there are discussions of systematic review and looking at the totality of evidence.
  • Discussion of assessing all the relevant, reliable evidence (emphasis added) begins on page 94.
  • Discussion on how to recognize "vested interests and spin in systematic reviews" begins on page 98.
The medical research proof standard is a lot like the GPS as defined in Genealogical Proof Standard: Building a Solid Case, 3rd edition revised, by Christine Rose (San Jose, California: CR Publications, 2009):
  • "a reasonably exhaustive search for all information that is or may be pertinent to the identity, relationship, event, or situation in question"
  • where we provide "a complete, accurate citation to the source or sources of each item of information"
  • then "analyze and correlate the collected information to assess its quality as evidence"
  • resolve conflicts
  • and "arrive at a soundly reasoned, coherently written conclusion."
I was first drawn to Testing Treatments so I could better understand the position of the medical community as it relates to Direct To Consumer (DTC) DNA testing. I am adamant about preserving the right to access my genetic data without going through a gatekeeper specified by government regulation. Along with other ISOGG members, I'm keeping an eye on what the international, U.S., and state legislatures and parliaments are doing as far as hearings and legislation related to DNA testing. I don't want ancestral DNA testing getting caught up in the same kind of legislation that is leading to many states closing access to vital records because they have erroneously been convinced it is a main cause of identity theft.

The portions of chapter four related to genetic tests offer some sensible cautions. We don't yet fully understand all of the interactions between our genes and our environment. But if we don't do DNA testing and analysis we won't ever understand those interactions. Maybe knowledge of genetic predispositions would make some people more fearful. I would suggest that person shouldn't have the test done. But I don't think I should be restricted from spending my own money on a test of my choosing because some other person "might" not take the time to learn what the test results may or may not mean with the knowledge we have. So many people today tout how the free market can cure all the economic ills of the world and all government regulations should be abolished. While I don't agree with that sentiment, I also don't think unnecessarily restrictive regulations should be enacted. We need to find the middle ground this country used to be proud of—striking a balance as discussed on page 48 of Testing Treatments—enough regulation to keep charlatans from abusing the uninformed public without restricting the rights of informed parties to as much information as they wish about their own bodies and genetic makeup.

In addition to seeing the similarities in genealogical, medical, and other kinds of research, I learned a lot from Testing Treatments about medicine and modern pharmaceuticals that will help me make better decisions as I am inevitably confronted by problems of aging. This book is worth your time reading for many reasons.

© 2011, Debbie Parker Wayne, All Rights Reserved