Department of Veterans Affairs Proposes to Build a Genealogy Database of 10 Million NEW Individual Genealogies Per Year

The U.S. Department of Veterans Affairs has issued a a combined synopsis/solicitation for commercial corporations to bid on building a huge genealogy database, starting first with persons with roots in Washington and Oregon. The goal is to create a Genealogy Medical Phenotype Resource Database.

The request is to create 10 million NEW individual genealogies per year in electronic format for persons with roots in Washington and Oregon. If successful, the project will be continued a second year to add 10 million more individual genealogies. The VA proposed the ultimate creation of a U.S. genealogy of 100-200 million individuals, linked to the entire VA system (25 million individuals). This service contract will last for three years, through the duration of the MERIT review grant.

Quoting from the solicitation: “The VA computerizes vast amounts of data on diagnosis, treatment, and outcomes. When paired with genealogical data, the VA resource will exceed other similar resources that exist, or are being created, in any other country. This resource will allow better understanding of the heritable contribution to many different disease and health traits in the VA population and will form the basis for many VA genetic studies.”

The solicitation also proposes, “This will be the first population-based genetic resource of its kind for the US. This VA Biomedical/Genetics Resource, the utilities we create, and the analyses we perform will allow many hypotheses to be tested, and will result in additional hypotheses for further investigation. The resource could someday provide the basis for individual relative risk estimations, segregation studies, disease association studies, pharmacogenomic studies, gene expression studies, directed clinical trials and more for the VA population and perhaps the world. The VA hypothesizes that the VHA will one day use it to identify and better understand many health-related predisposition genes. A better understanding of the genetic contribution to all aspects of health will lead to improvement in health care.”

I am confused by the wording of the solicitation for bids. The heading of the solicitation states the goal is to create “10 million NEW individual genealogies per year in electronic format” and yet the body of the solicitation states, “The Contractor shall provide approximately 10,000 genealogies per year in an electronic format for persons with roots in Washington and Oregon over the three years allotted to this study.”

Maybe someone who is well versed in reading government requests for bids can explain the difference between “10 million NEW individual genealogies per year” as stated in the heading versus ” approximately 10,000 genealogies per year” as stated later in the same document. I cannot explain the difference in numbers. Whatever the number, this might be the “Full Employment Act for Genealogists of 2015.”

The solicitation also states, “The Department of Veterans Affairs Salt Lake City VA Health Care System is seeking to enter into a firm fixed price contract with a genealogy investigative service company.” I have to wonder which companies are prepared to bid on this contract. The solicitation does state, “This solicitation is a small business set-side.”

Details may be found in the FedBizOpps.gov web site at http://goo.gl/AgTqIJ.

 

48 Comments

I suggest a better use of the money would be to fix their broken appointment system.

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    Stephen Comfort-Mason September 19, 2014 at 1:13 am

    I’ve been using the VA Health System since 2001. It all works just fine for me, including major surgery for a life-threatening situation. I have also always been shown respect and consideration, which is sorely lacking in private section health care.

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    Christopher J. Pauli September 20, 2014 at 6:25 pm

    I suggest a better use of TAX money would be to fix their broken appointment system.

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    Specifically, HOW is the appointment system “broken”? It works fine for me. It works fine for my older brother. It works fine for my younger brother. My appointments are available at any time online. Two days before a scheduled appointment, I get a call reminding me. If the appointment is for a specialty, I get a personal call. Any time I need to see a doctor, I call, explain the problem, and an appointment is usually set for seven to ten days later, unless it is an emergency. In an emergency, I might have to wait two hours. If it is a serious emergency, I have always been seen immediately.

    So, what is your problem with the appointment system?

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Why do the states of Washington and Oregon get this great gift? None of my ancestors went there, LOL.

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Iceland, which has an almost complete genealogy of its entire (small) population, has embarked on a genetic study of its population, largely for medical reasons, but which also has other uses. Some of these other uses raise severe privacy and ethical issues, which Iceland is debating. I see some serious potential ethical issues in doing genetic studies on people who have no choice but to participate, and this seems to be, on the surface, at least, the case in the VA studies. That’s on top of the fact that they don’t seem to be defining very clearly what they are about to do. To say nothing of Jan’s comment about using the money to improve service.

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Why on earth does the government think it needs to reinvent the wheel when the LDS church has the best genealogical record keeping system in the world. Typical government. If they get their hands on it it will be screwed up within a year.

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    They are not proposing a parallel genealogical system to the LDS system. They are proposing a system for MEDICAL purposes. READ the article. It really has nothing to do with traditional genealogical activities.

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    It should be noted the VA Health Care system currently operates the most advanced computerized medical records system in the world.

    I can go to any VA or DoD medical facility anywhere in the world, and all my medical records are instantly available.

    I can also request at any time a download of my entire medical file (hundreds of pages) in MS Word or pdf format, or a report that is called “Continuation of Treatment” report, which extracts specific data from the total file so that I can take it to a physician outside the VA system. Information is presented in a format standard to the health care industry so that the physician can quickly find what he might need to know to treat me.

    The new capability the article addresses will enable the VA to take the massive amounts of data they collect every day from patients and plug it into the MEDICAL genealogical system to enable more and better evaluation of treatment efficacy and help to improve overall the delivery of health care by the VA.

    They are not perfect, but they work very well for tens of thousands of people, every day.

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    Aside from my comments specific to the VA and the purpose of the project, and why the project has nothing to do with traditional genealogy, why would you want the government to get involved with a religious organization to deal with medical data? Isn’t the government supposed to keep out of religion?

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    Which record keeping system would that be, IGI, Pedigree Resource …

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ribbitting, ribbitting, ribbbitting….
University of Utah is already doing this along with Huntsman Cancer Institute for years for medical purposes. Not only that, the genealogical database they have is not limited to Utah.

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    Yes…wondering exactly what the differences are between the UPDB and this “new” venture. The UPDB was conceived in the 1970s…This idea is definitely not new from the description:
    “The Utah Population Database (UPDB) Shared Resource is a rich resource for cancer research involving genetic, epidemiological, demographic, public health, and health services delivery studies. The majority of families residing in Utah are represented in the database, with a special emphasis on genealogy records of the European founders of Utah and their Utah descendants. Studies using UPDB rely on the linkage between UPDB pedigree structure data, its extensive stores of information about disease incidence and prevalence, and a wide range of additional demographic, geographic, and vital information. Currently, the UPDB Shared Resource provides access to linked person-based records for more than 7.7 million individuals; updates to many data sets are added annually. For 35 years, researchers have used UPDB to identify and study families with an excess incidence of cancer, analyze patterns of genetic inheritance, and identify specific genetic mutations. Because of the predominance of large families in Utah, research utilizing UPDB has the advantage of large kindreds—30,000 members is not unusual—for linkage maps and gene discoveries. To date, UPDB has been used to identify a large number of human disease susceptibility genes, including major genes in the following cancers: neurofibromatosis type I (NF1), familial adenomatous polyposis coli (APC), breast cancer (BRCA1/BRCA2), and melanoma (CDKN2A).”

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I think that’s a little more information than I’m comfortable sharing with any government, but especially one that has a history of questionable behavior when it comes to medical research of unknowing subjects.

Liked by 1 person

As a wife of a 100% disabled veteran, I find this appalling! Why are they spending money on this?? This does not care for our veterans, just more proof of the VA wasting money!

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    READ the accompanying article! This project is all about IMPROVING the medical care the VA provides, through using the massive amount of data they collect every day treating people in the largest health care delivery system in the United States, to further determine the effectiveness of the care the provide, and better plan in order to improve that care.

    It should be noted the VA does more to encourage good health and practices more preventative medicine than any other health care system (like United Health Care or Humana) in the United States.

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This is typical of a government department that is out of control. Research of this type is better if left to medical researchers that have a specific goal in mind. The purpose of the VA is to administer to veterans not do research of this type.

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    Another person commenting without first fully reading the accompanying article explaining what the project is all about. And I would hope the VA WOULD be involved in research to improve the medical services they provide.

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Most traditional genealogy databases do not publish the identities of living individuals, but the proposed medical database would seem to need information on recent generations. I assume that contractors would mainly be using public records, such as marriage and birth certificates, which are usually protected from general public access for a number of years, as well as death certificates, which would list cause of death. They would also have medical records–from the VA medical system, at least–containing information that was obtained under assurances of confidentiality. I’m concerned about privacy issues if the database becomes accessible to the public at large (but there are ways to protect identities, such as giving each name a coded ID). On the other hand, the epidemiological benefits would be fantastic!

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I enjoy genealogy but not at the expense of the Veterans – the government should heal itself and the money going to the VA to take care of those who risked life and limb to protect us and our freedoms- or former freedoms would be more like it.
Why would the government want more info? All the reasons are spelled out in history we were taught and lived through because knowing what has happened in the past, can be avoided in the future (another thing we have lost).

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Is this a violation of patient privacy to use their personal and medical information without their permission?

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    They will just make giving consent a condition of receiving the benefit of treatment from the VA. You don’t want to give your consent, then you are free to go elsewhere at your own expense.

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There’s a real kicker at the end of the description and requirements:

“The contractor that will perform the services covered by this contract must have over 30 years’ experience in record linking have experience working on the Utah Population Database, UTDB; have access to Pleiades linking software, and have all of the VA required security measures already in place.”

Seems like only Ancestry.com would meet those requirements. FS would never bid on a government contract.

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    —> “The contractor that will perform the services covered by this contract must have over 30 years’ experience in record linking…”

    I don’t believe Ancestry.com has 30 years experience in record linking.

    What is now called Ancestry.com originally was incorporated as Ancestry Publishing Company in 1983, 31 years ago. However, the company did not record link any genealogies in the early days. It only printed books and (starting in 1994) it published a genealogy newsletter. In 1997, the company was acquired by two business partners, Dan Taggart and Paul Allan, who planned to transform it into a company doing business on the new thing called the World Wide Web. (I was in the room in 1997 at a press conference when the two men announced they were buying Ancestry Publishing Company.)

    The online service started growing rapidly and eventually evolved into the service we have today. However, that has been less than 30 years of record linking.

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    I didn’t know that. Is there any company then that could satisfy those requirements?

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    Ancestry.com wouldn’t qualify. Record linking is a specialized skill in health care – its used by a lot of medical research facilities, academic centers, and large government entities like NIH, UK’s NHS, etc.

    This is a medical contract, not really a genealogy one. It uses the same words, but it doesn’t really mean the same thing.

    Liked by 1 person

    Thanks Connie for actually reading the article, thus leading to an understanding of what was truly being proposed. I don’t think I have ever seen so many conspiracy theorists and general anti-government folks come out of the woodwork on a genealogical blog, of all things. Next thing they will be handing out aluminum foil hats at family history conferences.

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    The Department of Human Genetics at U. Utah (or persons who have worked there) may qualify.

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At Seeing the headline I thought AWESOME. After reading the article It looks to me to be a scam to provide cover for the genetic analysis they want to do for other reasons. Maybe they should leave genealogy to the private sector and focus on the fact that they’re providing (or not) really poor medical care to people who’ve EARNED the right to receive it.

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    READ the accompanying article! This project is all about IMPROVING the medical care the VA provides, through using the massive amount of data they collect every day treating people in the largest health care delivery system in the United States, to further determine the effectiveness of the care the provide, and better plan in order to improve that care.

    It should be noted the VA does more to encourage good health and practices more preventative medicine than any other health care system (like United Health Care or Humana) in the United States.

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    I’d rather not have all of my medical information available to the government. But I sadly think that may I may be too late. All our records at doctors offices are now in digital records.

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This proposal seems to be geared to huge University research organizations capable of quickly pulling together hundreds of researchers to perform the required services. The VA request asks for genealogies of approximately 2000 people each, and requires the submission of about 1,000 such genealogies each month. This kind of “industrial” genealogy production raises questions about the ability of the project to produce anything of truly verifiable and accurate data. Many researchers involved will, by the very nature of the project, have little or no experience in creating genealogies (e.g., college students), and could only be supervised on a cursory basis to accomplish the volume of information required.

These University research organizations would also have to demonstrate their experience in working with targeted populations to help determine “heritable contribution to health-related traits”, such as Parkinson’s Disease or ALS, withing specific population groups, such as the well-documented LDS population. The research goal seems to be phenotype/genome matching for medical research and ultimate treatment, although how the government intends to accomplish all of this is unclear. The genealogies they are requesting be done through this program would need to have medical histories included to be of much value, which is interesting since simply finding great-grandpa Jones birth date is sometimes next to impossible.

In my opinion, while the research goals may be commendable, the potential for data abuse is considerable, assuming the data they receive is accurate enough to be of any value.

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    Cause of death and social security numbers are both reported on Death Certificates, which are government records and probably already accessible to the VA. They could probably also data-mine Medicare records (which also include social security numbers), or the private health insurance industry’s underwriting database to discover the medical conditions for which individual people have received treatment.

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In the 50’s and 60’s the military conducted quite a number of atomic tests around the US, including Washington, where my family lived from 1955-58. Winds blew the residue down into Oregon. The Nevada tests were blown into Arizona and New Mexico. Since that time, there has been an acknowledged link between these tests and thyroid cancer.The Federal Government has a website that allows you to insert the dates of your residence in particular areas and then it calculates your increased risk for thyroid cancer over and above the normal risk. I have had to have my thyroid removed, and my sister (at 42) and brother (at 43) have died from non-thyroid cancers. There is no doubt in my mind that the Government is trying to determine what long term and lasting effects these tests have had on the general population. For example, the Muraroa Atoll in the South Pacific was subjected to massive tests and to this day remains totally barren with no sea life anywhere around it. The families have never been allowed to go home.

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    Sea life came back to the area long ago. Former residents HAVE been permitted to return, and many do on an annual basis. The vegetation is green and lush, just like before the testing. The soil retains some radioactivity however, so while residents can return for a visit, they can not live there.

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    Moruroa Atoll is owned by France, still off limit. It’s Bikini Atoll where families were allow to return and visit.

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(To add to my previous post)
The genealogical medical study would allow the Government to determine illnesses of ancestors and descendants which correlate to higher incidences of reaction to atomic fall-out.

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I, too, wondered who would have 30 years experience, with the specific data linking that they need an the software that is specified. It sounds like a justification for a sole source contract.

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Key here is that the contract is a ‘small business set-aside’. That eliminates all major universities and many companies (like Ancestry) whether or not they have the skills. Combined with the required skill set and past experience requirements, this proposal is definitely targeted to a specific company. The company cannot be named because officially the VA has to compete the contract to get the ‘best value for the government’. They could not justify a sole-source contract, but can (and did) write the proposal to eliminate virtually all organizations.

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This topic is running in circles. Let’s look at it this way:

Who would want this information – Monsanto for artificial meals.
Dow for the chemicals.
The pharmaceuticals to make pills and shots
The US patent office for rights to disease – US 20120251502A1 – 2007
Aspertame – oops Amino sweet – they changed the name because Aspertame was losing fans. Aspertame has been connected with asthma. The children’s flu affects those who are asthmatic. When I was growing up, I knew of only 2 people who were asthmatic, now they are all over the place.
Childhood shots have been connected to peanut allergy.
GMOs are sterile and Monsanto has been quoted as saying they want to sterilize everything – trees are next.
Herbicides have been connected with the bee population decreasing in vast amounts – but who needs seeds if none of the plant life is sterile?
Have you checked what the prescribed Eggos contain? It is chilling.
Now look at the resumes of some of the US Depts.
There are probably many more but these are the ones I have found,
The Gov wants this genetic information for something else – I have no idea what but there is someone who knows.
Eugenics?
I suppose I am a crank but so be it.
B Young

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It looks to me like this RFP was written specifically for Pleiades Software in there “About Us” it says the following:
(http://www.record-link.com/aboutus.html)
Sue Dintelman and Tim Maness have been working on family data record linking projects for over 30 years. They were the technical staff for the Utah Population Database Project at the University of Utah which built a genealogy of Utah for use in genetics research in the early 1980’s.

Pleiades themselves meet all of the requirements.

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Dick asked “Maybe someone who is well versed in reading government requests for bids can explain the difference between “10 million NEW individual genealogies per year” as stated in the heading versus ” approximately 10,000 genealogies per year”.

The VA makes a distinction between a genealogy and an INDIVIDUAL genealogy. From the RFP: “The Contractor shall provide approximately 10,000 genealogies per year in an electronic format for persons with roots in Washington and Oregon over the three years allotted to this study. Each genealogy will contain the records for approximately 2,000 persons.”

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    They are looking for something, for them to go to that length. For them to isolate Washington and Oregon, Agent Mueller needs to check it out.

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Maybe they are looking for a substantial number of persons in Washington and Oregon affected by the Hanford, Washington, plutonium reactor site on the Columbia River, established in 1943, which has 2/3 of the radioactive nuclear waste in the US by volume and which was decommissioned during the Cold War and is the site of the largest environmental cleanup project underway in the US. As Casey Stengel once said, “You could look it up.”

VA databases would provide a ready-made large number of possible affected persons and the University of Utah database would also have a fairly large number of LDS members and others in the northwestern US.

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