"The Ethics of Advice"

Today's New York Times, on page 1 of the Business Section, has an article  entitled "The Ethics of Advice" by Andrew Polack. The general thrust of the article is that some genetic counselors are beginning to discuss whether a conflict of interest is created when genetic counselors are employed by DNA testing labs:

Now, as the number of tests and the money to be made from them are exploding, another question is being asked by professionals in the field themselves. Is it ethical for genetic counselors, who advise patients of whether to undergo testing, to be paid be the companies that perform the tests?

...in some cases "the line between genetic counselor and sales representative is blurred." 

Of course it is a conflict of interest. That does not necessarily make it unethical. Full disclosure and informed consent certainly have a role here. We certainly are going to need many times our current number of genetic counselors as with increasing speed we move into the brave new age personalized genetic medicine. The current number of accredited educational programs for genetic counselors is so small that they can only create a bottleneck in this pipeline. 


Genetic counselors need to be paid by some one. I see no ethical problem if some are paid by the labs as long as that relationship is fully disclosed and customers are advised that they may wish to seek their own independent counselor. 


Is this relationship between supposed impartial adviser and company representative really that different from the relationship of physicians recommending medical tests or other procedures from which they or their employers benefit? Bending the upward spiral of health care cost curve may require us to rethink the ethics of many players. There are so many vested interests intersecting in the health care marketplace that the best interests of individual patients can easily get lost. Let the dialog about ethics begin; and step one is to make sure individual patients are well represented in the discussion.

1940 Census: Does Your State Have a Name Index?

Indexing of the 1940 Census is going faster than I had expected, but it still is not fast enough. God give us patience and hurry up about it! 


The images have only been available for three and a half months, and already name indexes are available for 38 states and the District of Columbia. No single site has name indexes for that many states. However, between FamilySearch.org and Ancestry.com a majority of the country is now available for searching by name. Both are providing free access--at least until the end of 2013. FamilySearch promises free access forever. Below is a list of the states for which name indexes are already accessible:

	Ancestry.com	FamilySearch.org
Alabama	√	√
Alaska		√
Arizona	√	√
Arkansas
California	√	√
Colorado	√	√
Connecticut
Delaware	√	√
District of Columbia	√
Florida		√
Georgia	√
Hawaii	√	√
Idaho		√
Illinois
Indiana	√	√
Iowa		√
Kansas	√	√
Kentucky	√
Louisiana		√
Maine	√	√
Maryland
Massachusetts
Michigan	√
Minnesota		√
Mississippi		√
Missouri
Montana	√	√
Nebraska		√
Nevada	√	√
New Hampshire		√
New Jersey
New Mexico		√
New York	√
North Carolina
North Dakota	√	√
Ohio	√
Oklahoma		√
Oregon	√	√
Pennsylvania	√	√
Rhode Island	√	√
South Carolina
South Dakota		√
Tennessee	√
Texas
Utah		√
Vermont	√	√
Virginia	√	√
Washington	√	√
West Virginia
Wisconsin	√
Wyoming		√

What is coming next?

Ancestry claims the next batch of states will include "AK, AR, ID, MA, MN, MO, NM, ND, OK, RI, SD, UT". Ancestry also also offers the opportunity to signup to be notified when specific states have name indexes available to be searched.

Several states including Arkansas and Missouri appear on the verge of having their name indexes go live at FamilySearch. Texas, West Virginia and Pennsylvania may not be far behind.

Later this summer HeritageQuest plans to start rolling out its version of this census.

However, for the foreseeable future, anyone researching my wife's family in Chicago will have to rely on location searching using the helpful 1-Step guides prepared by Joel Weintraub and Steve Morse which have been discussed previously on this blog. So will any of you who are researching the Carolinas, Connecticut, Massachusetts and New Jersey. With better family planning we would not have allowed our families to live in these states in 1940.  

In any case I expect all these states to be available long before my original expectation of the end of 2012.  The friendly competition between the two indexing teams has been a great service to all of us. Thank you volunteers and paid employees alike who have caused this mammoth project to move along so quickly. 

Should I Take A DNA Test?

I often am asked the question, Should I take a DNA test? This question is raised with more frequency when a DNA sale, such as the one I blogged about yesterday, is in progress. Up until the last few months my answer was, "Only if you have defined a genealogical question that a DNA test might help answer." 


Now my answer has evolved. My previous response is still the most important. You should have realistic expectations about what such a test may or may not be able to tell you. If you have defined a genealogical question, it is easier to examine:

• if any DNA test may help to provide an answer to your specific question;
• which kind of DNA test may be the most likely to provide helpful information; and
• who in your family should be tested to find the desired information. 

For genealogical purposes three tests are available to the general public. Y-chromosome tests, for men only, trace surname--paternal lines. Mitochondrial tests, for both genders, tract umbilical cords--maternal lines. Autosomal tests provide information about all ancestral lines but are genealogically useful for a few generations back in time. Therefore, the part of your family tree you are exploring will suggest which of these tests--if any are likely to provide useful genealogical information and whether you or one of your close relatives should be tested to discover potentially useful matches.

In recent months I have become aware of two other reasons for taking DNA tests for genealogical purposes. My father-in-law died in October. Subsequently, my wife and I moved into a continuing care retirement community. These two events have caused me to realize that the DNA of the older generation of our families is worthy of being preserved--along with their oral history and documents. Sometimes younger family members can be tested to achieve the same results. However, particularly with autosomal testing, every generational transfer erodes the results.

A third reason for testing is curiosity about new things. This is not sufficient motivation for everyone. However, for those with discretionary income, it may be provide justification. DNA test results may provide entertainment longer than a golfing weekend and perhaps at a lower cost. However, if you are trying to justify testing on this basis alone, you should understand that you may not find immediate gratification through matches with previously unknown relatives.

So, should you take advantage of DNA sales? Maybe. As long as you understand why you are testing and what the potential benefits may or may not be. The test results will not, by themselves, magically extend your family tree. However, when combined with traditional research methods and considerable communication with apparent matches, this tool can lead to new insights about your family history.

The exciting possibilities of testing DNA for medical issues is an entirely different topic which I may blog about in the coming weeks. The potential of personalized genomic medical treatment are truly mind boggling as are the related ethical issues. 

FTDNA Sale: More Details

When I published my earlier post today, no complete details of the magnitude of this sale had been released. Now more details are now available from FTDNA:

NEW KITS	Current Group Price	SALE PRICE
Y-DNA 12	$99	$59
Y-DNA 37	$149	$129
Y-DNA 67	$239	$199
Family Finder	$289	$199
mtFullSequence (FMS)	$299	$219
FF+ Y-DNA 37	$438	$328
FF + mtDNAPlus	$438	$328
Comprehensive (FF + FMS + Y-DNA 67)	$797	$617
SuperDNA	$518	$428
UPGRADES
12 to 37	$109	$70
25 to 37	$59	$35
25 to 67	$159	$114
37 to 67	$109	$79
37 to 111	$220	$188
67 to 111	$129	$109
mtHVR1 to Mega	$269	$209
mtHVR2 to Mega	$239	$199

If you have been thinking about ordering a DNA test, this sale may be attractive to you. It is unclear whether or not one must join a project group to get the full sale prices. However, joining one or more group will help you get the maximum benefit from your tests.