Ancestry research is one of the flavors of the season on TV, and DNA testing is featured in one of the offerings. "Faces of America," with Henry Louis Gates, Jr., just finished its run on PBS, while "Who Do You Think You Are?" has just started on NBC. The programs share a focus on selected celebrities, though "Who Do You Think" is "glitzier and less high-brow" -- the New York Post clearly considers that a compliment.
Both include a substantial amount of good old-fashioned document-based research, with the inevitable "wow" factor. (The 24th great-grandfather of Elizabeth Alexander, the chair of African-American Studies at Yale, was King John of England!) But where the NBC program seems to stick with that process, Gates took a higher-tech route; his program partnered with -- you guessed it -- 23andMe.
"Faces" promoted itself with a sweepstakes for "the 23andMe Complete Edition, retail value $499." The company's Health Edition is currently $429 and includes 21 carrier-status reports, 12 on disease-risk, 8 on drug-response, 10 on traits such as HIV resistance and muscle performance. The Ancestry Edition includes mtDNA and Y-Chromosome tests, plus various bells and whistles, and retails for $399. The Complete Edition includes both, but wait, there's more -- you also receive the ability to download your raw data, for nearly 600,000 DNA positions.
Despite this promotional emphasis, the first three "Faces" episodes (of four) concentrated on conventional research, and rather movingly portrayed aspects of the immigrant experience. Only in the fourth did DNA analysis become a topic. Gates himself and his 96-year-old father had their whole genomes sequenced -- the first African-Americans, the first father and son, and the oldest individual so far. Gates recruited Eric Lander to explain about the "heirloom" that is your genome, the "patchwork quilt" that is passed down through the generations.
"So you're saying, this is the ultimate form of genealogical analysis," said Gates, "the ultimate family tree."
"Exactly," Lander replied. "This is the family tree."
That, of course, is both true and somewhat misleading, since it ignores all social and cultural issues -- not least, who we count as our family. Later in the program, George Church and colleagues introduced Gates to his genome, which "predicted" various things he already knew, such as his lactose intolerance, and the likelihood that he would not go bald. Gates was dubious about this, and lowered his head to show his bald spot, but the scientists each insisted, "I see hair."
The others on the show, however, had to settle for the much less informative analysis of mtDNA and Y-chromosomes done by 23andMe. (For more about the limitations of this approach, see Chapter 2 of Playing the Gene Card? by my colleague Osagie Obasogie.) The results were mostly less than stunning:
The show mentioned but rather skated over the fact that the test does not distinguish between Asian and Native American ancestry. Gates used this to claim some relationship with Ma, since Gates has some genes that are assigned to the Asian/Native American pool. Generally, however, they used the commonsense simplification -- Ma is Asian, while Eva Longoria has some Native American genes, though to her surprise she actually had more European ones.
The show then played some games of who-is-related-to-whom, genetically. Gates himself is a distant cousin of Malcolm Gladwell (hundreds of years ago, on the white side). Yo-Yo Ma bears some relationship to Eva Longoria ("He's Mexican?" she retorted). Meryl Streep is related to Mike Nichols. And so on.
This sort of thing is a purely frivolous use of DNA technology, but it would be a little harsh to deny Gates (or the rest of us) that small pleasure. Still, the idea that we are defined by our DNA rather than by our personal experience and our cultural upbringing is potentially dangerous. To be fair, the main thrust of the series was that we are each individually connected to a broad and deep community over time, a much more subtle and inclusive message.
There was one dissenter in the program -- Louise Erdrich, who refused to take the DNA test. She is Ojibwa, and that identity is vital to her:
"I really feel that identity is a very complicated mixture, of what you grow up with, what you find out about yourself. I didn't want to add any confusion to it. It wouldn't do me any harm, but when I asked my extended family about this -- and I did go to everyone -- I was told, 'It's not yours to give, Louise.'"
"Interesting," commented Gates, and it is. He could, of course, have left that refusal out of the program, and it's to his credit that he did not. But it's worth a little more consideration. (The website has a somewhat longer version of the interview.) Erdrich has received some criticism for her decision, suggesting that she is so attached to her self-identification as a Native American that she is not willing to doubt it, much as racist whites have been known to hide any "taint" of blackness or "Jewish blood."
This misses her point completely, not least because Erdrich also embraces her German ancestry. What is vital is the concept that the genetic heritage she shares is exactly that: a shared heritage. As such, no individual has an untrammeled right to give it away, or expose its secrets. One may disagree with that assessment, just as one may choose to visit the Museum of Indian Arts and Culture in Santa Fe, despite the request (published at the entrance) of some Native Americans that you let their past lie undisturbed; but this is not a simple matter.
The idea of familial susceptibility to disease is acknowledged to be controversial: If I am at risk, should I tell my brother if he does not wish to know? How do we handle uncertainty in these predictions? The more general question raised by Erdrich's family is less often examined. Many minority groups around the world are extremely worried by the idea of "biopiracy" -- and the conventional western academic view that all knowledge is beneficial should not be allowed to ride roughshod over these concerns by default.
Finally, Elizabeth Alexander, the African-American poet and professor, came up with another of the most interesting comments in the series, when she discovered that she is, by DNA, 66% white:
"It just gets curiouser and curiouser. But of course if all of us were only known by our DNA, then we'd have a whole different American history."
Indeed we would. It might, however, be no less prejudiced than the one we already know. "Know Thyself" is the motto Church and company took from ancient Delphi and stamped on the box containing the DNA listing they presented to Gates. "Nothing in Excess" would a good companion from the same source.
Previously on Biopolitical Times:
Posted in Media Coverage, Pete Shanks's Blog Posts, Sequencing & Genomics
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Comment by Diane Farmer, Apr 23rd, 2010 6:07am
Please help me and my girls. BRCA gene they knew and hid it from me. They are just going to let me die. Let my story and 35 years of medical records get into the right hands so this can never happen again to anyone. My daughter had a bad pap two years ago and a breast finding. She has been very sick and they are now doing this to her. Please make my story public so all will be protected in future years.
I wrote many letters to Doctors regarding the pigmentation loss and Kidney problems with my girls. I have had problems with kidney pain and blood in my urine for many years. My mom also had this and developed a tumor on her kidney and died after the surgery. This is all part of it and what I have been trying so hard to put together for many years. I now see that everything I was bringing to show them was something they already knew. I was not asking the wrong questions I was asking all of the right questions. They knew this all along. Please if you could find a specialist where you work and explain all of this for me. I will be eternally grateful to you. I know the game play in this area is a bit too much for me to fully accept. There are many that know me well that are very upset and are supporting me through all of this. My hands are tied. I am getting very sick too fast.
I was also anemic most of the time in childhood and sent home from school because they were concerned. My mom simply stated that is just how I am. This I believe now was the original warning of what would come with my health. I was sent to the Lowell General Cancer Center in 2005 because I still am anemic and my reticulytes were very low. My daughters run anemic too.
I now feel like I will die soon. I am getting very sick. This time it is much worse than the past ones. I know I am covered and my cancer has spread very fast the last few months. I made three attempts to be tested genetically. I was refused all three times. My family carry’s the BRCA gene (Early onset Breast Cancer and Cervical Cancer) from my dad’s side of the family. There is much reason to believe that we have Faconia Anemia. My mother’s father’s side died very young each generation. She always said they died of a rare anemia and scoliosis. My daughters and I all have this. They refuse to draw the blood work on me. My insurance is involved in the bigger picture here. Not the way you think. I will explain in a minute. I even went to Dana Farber last week and with 35 years of records showing my ovaries my breast and complaints of my kidneys. Ovary removed in 2000 after dealing with this pain since 1975. I have the pictures of what was removed that originally was thought pre op to be a tumor. They told me they could not identify this dermoid but now I wonder. Many nodules were found in my pelvis. After this surgery I went out of work sick for a very long time and lost control of my bowels and urine. This is when all the things started to show on my chest CT scans and in my breast. This is the time that my breast started to swell and my records will show all of my complaints of this.
Twice I had surgery to remove my ovaries from being attached in areas they should not have been. Breast showings started same time. Plus I have very dense breast. Chest CT scans started showing metastases nodules in 2002. I know that the cystic space that is seen in the left upper chest is what is in my breast. They will not let me prove any of this. Then all the pleural plaques started to show all over my ribs, Lesions on diaphragm, then liver and kidney, brain. Then a few years back my Thoracic spine and then my pituitary. I can’t forget the thyroid that shows many and thyroid has been ruled out. The lung nodules were last seen 4 years back abutting the lung bases and one in clearly is in the lung. I am now covered and have so much in my body, I cry because I hurt so dam bad. My cousin was a stage three, 22 nodes. They believed her cancer went undiagnosed for about 10 years. Her father was a twin and his daughter died at age 20 of the brain tumor. I have records to prove how bad I am. We now have another cousin very sick. We are all the same age. Two of us now have daughters sick with this. There is no where to turn for help. They peg me through my insurance ID #, SOS # and hospital ID #. This is how they do there controlled study’s on me. They make sure you do not go out side of your area of doctors. Now that I know what they have been hiding with me I am very concerned. They are not happy that I know and have been trying so hard to reach me at work and places of previous employment.
They used me for there research of this BRACA gene and I did not catch on until now. I cry now for my three girls who have been very sick also. My middle one had a bad pap result two years ago. Then a Breast finding. She has lost 45-50 lbs. recently. She is throwing up most days. They tell her it’s nothing. She will out grow these. They put her on psychiatric medicines and I know she is sick not psychotic. This is there game. I offered to pay for the BRCA testing out of my pocket last week and they escorted me out of Dana Farber. A woman stopped me in the lobby and asked if I was ok. I explained I had come for help. And wanted these tests drawn. She said I had every right to have them done. She sent me upstairs to the desk to set up the appointment. Someone came down to meet me and made me leave the hospital. They just held onto my 35 years of records that I hand delivered and would not give me them back. They told me to take some Tylenol. You have to see how swollen the nodes are above my breast and into my armpit. Why would a hospital sending you away and refusing to help stand there with your medical records and tell you they are now there property? Why would it be so dam important that they would not hand them back to me if I had hand delivered these for them to see? I think they panicked when they seen how I possessed every record to support what I had come about. This whole appointment was a set up. The doctor that my appointment was set with never even seen me. I was supposed to be seen by a Dirk Iglehart MD. They tried to tell me he was a surgeon and there is no reason to bring him in on all of this. I know that he is the Director of the Women’s Cancer Programs at Dana Farba and this is whose office called me for all of my insurance information. This is the doctors NPI # that I was given for my referral there. His NPI # is 1174589329. I learned the hard way that I will not get the medical attention needed. Or the chance to survive. I was asked where my girls work and if I have a health care proxy in affect. I know why these questions were being asked that day and I don’t like any of it. They know that I know everything now. I know if I die they will hide everything I have going on like they did with my brother and mother last year.
I have been sent to Boston Hospitals for over ten years. I have always had this breast pain and they told me it was neurological. Then when my breast swelled this bad and all the lymph nodes above the breast and armpit, they refused a referral to go to a breast center or have an MRI done. I was told I could not go for a second opinion and especially to Boston. They allowed them for everything else as they screwed me around the past 10 years. Now that I found out what they are doing to me and my family I’m afraid more than ever. The treasury office at my town hall had to fight for me to go into Boston. My Insurance is Blue Cross Blue Shield. I have held the same insurance through my town for 28 years. The girl at the treasury office made calls to Blue Cross to get me into Dana Farba. She explained I had every right to have this referral sent through. They were totally upset that I was having any question what so ever on this. My Primary Dr. Chang had his nurse practitioner call me back to tell me still I could not go. She stated I fall under an AQC with my insurance so I can not go else where and they could not approve me to go. I again called back the town hall to check into this and she checked into it. She was told it stands for Alternative Quality Contract and yes it means they have to send over the referral.
I now believe they have been studying me all along. The daughter I speak of here is the one who almost died in childbirth with me. I know this is when my first pathology was sent into Brigham’s. All of my pathology has been sent to them all along since and I question this more than ever now. My daughter at age four became very ill and was bleeding severe from her urine and had a very high temp. She had to go to her pediatrician’s office twice a day to get shots of antibiotic. There was a cyst and a calcification found on her Kidney. She was then sent to Boston in 1990 to the Children’s Floating Hospital and I know now they have always known what is wrong with us. Then it happened to my third daughter at age 4. There pediatrician was totally amazed. He had never in all his years of practice seen this in a child so young.
You see the American Civil Liberties Union and many physicians fought to make sure that these genes we carry cannot be patterned. The Supreme Court last month agreed in favor of this lawsuit and the Judge’s final decision was they can no longer pattern genes for research. The Law suit was filed regarding the BRCA genes that we carry. I now know this is not the only reason they hold onto its pattern. Even if my insurance company agreed to pay for this it would still not go on record. They use us for there research and we can not prove the gene by others. Even if I was to have it drawn and paid out of my pocket, I now see that if Myriad are the only ones that test for it then this is how they get away with using us as mice and never allowing us to prove the game they are playing.. The insurance company’s, the Big Boston Satellite Hospitals and certain doctors that have been treating us all along play this game well. I believe it is for the profit that will come long term for all of them.
You see they make certain records disappear. All of the records from my last two pregnancy’s. They tell you that you passed certain test and you collect your records and find out you didn’t. Then when you sit down with your primary doctor of many years and tell him that someone is missing something and he moves to Florida suddenly never to be seen of again.
My gynecologist retired instantly. I sent for my records from him twice. He never sent them to me, but he did call and ask what is up. He asked how that baby turned out that he had delivered in that emergency c-section and I was stupid and told him of her kidney and how she still has to follow up in Boston about it. This is right when he retired. My records were not sent into storage as were all his other patients. They were never to be located and Lowell General holds nothing of my last pregnancy.
Then emergency doctors send you away and block you from getting any care. They make you sit in the ER for the whole night when no one else is even there.
They tell you that they need all of your scans and CT because they are destroying them all and putting all on CD. Then your CD’s are unable to be read my updated systems. I kept some of my original films and have all of my records. I have never stopped believing in me.
When you have a spinal ordered by one doctor and another one insists on doing it instead and he runs two hours late and can’t be found. Then you see that after you showed him all those mets nodules and lesion on my records just done they needed to cover this. So on my spinal it states on the bottom duplicate ordered, specimen cancelled. It has two different testing times being done and one is almost two hours before it was ever drawn.
Then you have to wait 6 months for a new Primary Dr. to see you and then when you start showing all of your medical records and how years earlier you came about the breast and ovary and explain all the similar issues that your kids and mom have going on. And she suddenly moves on. Why would someone all of a sudden give up there practice of many years to go work at the emergency room at another local hospital? I know why. It is to block patients like me from coming for help. This is how they get to play there game.
My nurse practitioner sent me to the local cancer center in 2005 because of my labs and what was showing with all my scans and MRI’s. They sent me away with all that I had going on. They told me to go to a mind body program. The nurse practitioner that sent me there no longer worked for my doctor when I returned for my follow up. She was very concerned whet my daughter’s labs all came back abnormal. Her liver and D-Dimmer. The lab in my primary cares office was no longer there. A state lab, Lab Corps opened on the corner of the building at my doctor’s office.
You write a letter 50 pages long and bring it to a doctor in Boston to prove all of this and he sends you away stating they are not a diagnostic hospital. He writes a follow up letter stating that he and another doctor both had seen me two years prior. I never met that other doctor before in my life. He also writes in his letter I brought films more than two years old. They were just done and they showed the metastes lesions now showing on my spine and I went out of work for ten more months.
When you leave a cancer center and then all your accelerated mammograms stop and they no longer mention anything in your reports. But the women doing the mammogram are very concerned because I lost 28% of my breast tissue in one year. She wrote this on the envelope of my mammogram. Then all accelerated CT scans stop and the last one that showed that much has at the top Dr. John Chang from New Hampshire. My doctor is Dr. Jack Chang from Lowell, MA. This is not a mistake. They wrote this so he can say later on he never seen that report. Why would I believe this? They stopped all CT scans on me back then. I have been a research victim in a controlled study. My insurance is very involved. I had pre cancer cells found in my colon in 2002 at the same time the metastic nodules showed on chest CT. My thyroid was out of control with labs and swelling. I grew a growth on the right of my neck and the left lymph node has been swollen on my neck since 1997. They say it’s nothing to worry about.
My health care connection I use to call was a local number out of Boston. It is the one that is given to us in our package each year from Blue cross Blue shield. Not I. I have a health care connection that is out of Morrisville NC. I have a 1-877-301-1430 telephone number that I have to call and get my letters from a Dr. Steingisser, M. D. medical director through this Blue Cross Office.
I want all of my records and films and the records of my daughters and more reviewed by the ACLU or someone outside of this circle of play. I want my daughters to have a chance at life.
My oldest is 27 and will be walking down the aisle soon. She was put in the hospital a few years back for what is going on with her and she had very bad liver labs etc. They sent her away and told her to just think positive. She stayed jaundice for many months through her body. This game play has to be uncovered and stopped.
My brother had a social worker that was in charge of his case when he died suddenly at age 40. She had called my mom to ask if my brother was ever diagnosed with Hepatitis C. My mom said no and we all knew he didn’t. He had been in doctor’s care many years and much was going on with him. She told us that there was a lot being found on his liver etc. We were never given his autopsy report. They played a game here with us on this. I know what those lesions were. She was let go by the state as a social worker and we were unable to reach her. I pray that someone who reads all of this will help me and my daughters. This is not just about us. If they are doing this to us then I know that they are doing it to many more.
This is why insurance companies only allow you to go to certain doctors in there circle. This is how they pull off these controlled studies. I know that they all benefit, the big research hospitals benefit, biotech company’s benefit, billions will be made off of simple people like me and my daughters. I also know that many powerful figures in our country hold stock with many of these large biotech company’s and even sit on there boards. How do you stand a chance with all of this going on? They will be in the lead of research by studying the gene and how it splits and how it spreads and every little detail. They sent me to a genetic counselor. I was to come back and have another genetic test because my mother’s cousin had all the same as I going on and she died of the cancer in the end. I cried when he bowed his head and sent me away saying there is nothing I can think of to test you for. Yes there was. This is nothing but a research game to them. My mother dies last year with a tumor on her kidney. I know they know what we have.
Twenty eight years of paying for good insurance and I was paying to have myself studied. How friggin unreal is all of this.
PO Box 277, Nuttings Lake
Billerica, MA 01865