The Wandering Gene and the Indian Princess
Page 23
February 21, 2009, was a brisk, clear, dry Saturday in Culebra, with scant snow on the ground. Marianne Medina got up at sunrise. After helping to distribute the posters earlier, this morning she drove up and down the country roads, tying bunches of blue balloons to telephone poles and signposts. Balloons were a custom in the community to reassure drivers that they were going in the right direction—to T-ana’s Restaurant, the host of the Hispano DNA Project, which had come together because of her daughter, dead ten years ago this winter.
Shonnie’s cousin Beatrice Martinez Wright had a bad case of the flu, but Bea insisted on making the long drive from northern Colorado. Bea, her husband, and their son stayed on Friday night at the San Luis Inn Motel, Culebra’s only motel, which intercepted visitors who might otherwise veer into the bed-and-breakfast at El Convento. Harry arrived at the motel around 9 a.m. with his medical bag. Fittingly, Bea would donate the first blood sample. She wasn’t up to attending the group session.
While her husband and son hovered in the background, the doctor explained the procedures to Bea, who sat primly on the side of the bed, pale but game. When she had signed the consent forms, she held out her arm, and Harry drew three vials of blood, about 20 cc in total. It seemed an awful lot to take from a breast-cancer survivor who wasn’t feeling well.
Besides Bea, several members of the extended Medina-Martinez family had been invited to the community meeting. The advantage was to salt the group with genetic carriers who, because of their BRCA markers, were known to be descended in some way from Jews. The disadvantage was that the sample was not scientifically random and would not necessarily produce a representative picture of Hispano DNA. Whoever showed up had been pulled in by advertising and word of mouth, with Bea herself helping to spread the word about the meeting to her relatives. Who knows exactly what we will find? Harry said, acknowledging the uneven way that subjects were collected. He parked his car behind T-ana’s. Marianne’s small lot was filling up already.
Stanley Hordes, traveling with his wife, got lost and missed the 10 a.m. starting time. Cars lined the side of the road, and he was surprised by the turnout. This middle-of-nowhere café, Stan remarked. I was not prepared, he said, for the number of people who were willing to open their veins. About forty people were inside the restaurant having coffee and pastries, and thirty more were on the way, coming not only from the Valley but also from Albuquerque, Pueblo, Denver, all returning to the place of their roots. The Pueblo Chieftain sent a reporter, and a genetic counselor, Kate Crow, arrived from the Springs. It was a good thing Harry had decided to hire a local phlebotomist to help him. Marianne and Iona were busy in the kitchen.
Questionnaires and consent forms were stacked on a side table. The one-page questionnaire asked participants to list the names of the past five generations of their relatives, along with their relatives’ places of birth and death. A complete family inventory reaching back that far would need to contain dozens of names. But here only the paternal and maternal lines were to be entered, the father’s father and mother’s mother, etc., for five generations. This type of family tree, which limits itself to the two enclosing branches, is designed to support Y-chromosome and mitochondrial DNA analyses.
The consent form, ten pages of boilerplate, required the study subjects to read and sign their initials on each of the pages. Harry was very serious that people should know what they were getting into when they enrolled in genetic research. Taking a microphone to the far end of the dining area, where Joseph used to perform, Harry walked the participants through the issues. The main thing they must understand, he said, was that no individual results would be reported. Their names would be stripped from the samples—anonymized, as he put it—and only a collective portrait of the DNA would be given back to them. This was meant to smooth out idiosyncrasies and prevent anyone from worrying about individual health risks. You will get information back about your community, Harry stated. Though we are interested in the genetic basis of disease, we are not approaching this study as your health-care provider.
Highlighting the ambiguity of the Hispano DNA Project, the consent form was the same one that Harry used in his Jewish ancestry project at NYU. The top sheet was headed “Origins and Migrations of Jewish Populations,” and a summary section read: “The purpose of this study is to trace the origins of the Jewish Diaspora and to examine the genetic similarities of Jewish peoples, including Cohanim, Levites, and Israelites from the various ancient Jewish tribes.” The text advised: “You have been selected because you are a Jewish person with knowledge of your geographical ancestry.” In language that was a bit too technical for the audience, Harry explained how the larger study was going to be tweaked for the Hispano population. The purpose of this study is not to demonstrate that you all are Jewish, he said, while reminding them about the 185delAG mutation and its link to Spanish conversos. But as Harry had figured, the ambiguity of his message wasn’t a big deal. Eager to learn about their genetic heritage, the Hispanos consented without quibbling, and the only person to get up and leave was a man who had expected to receive an individual test report.
Dr. Ostrer held up the three tubes that needed to be filled; two had purple tops and one had a yellow top. Why take blood and not saliva? asked Clara Martinez, the newspaper editor and genealogist. DNA is of higher quality in blood, Harry replied, adding that the samples would be maintained in special cell lines in the laboratory. This step would immortalize their DNA, he might have pointed out, so that their genes could be studied indefinitely.
Clutching their paperwork, the Hispanos advanced in stages from the restaurant tables to what might be called the waiting room, a bank of chairs up front, and from there to the phlebotomy station, a small table manned by Harry and his hired helper. Behind them was a local nurse, a last-minute volunteer, who took the samples and packaged them with the completed forms. And in the back corner, behind the medical team, Clara set up her computer containing the names of thousands of New Mexicans of the past. Although several families brought along their pedigrees, many others were able to fill in the gaps in their histories by consulting Clara’s genealogies. Throughout the session, there were hiccups of laughter and surprise at what she was able to dig up: a long-lost grandparent, or an uncle who was better off staying lost.
Here comes Maclovio Martinez, his sleeve rolled up. Maclovio is a fierce and modest traditionalist of Culebra. Here is Ruben Archuleta, the self-published author of a book on New Mexico’s penitentes, copies of which Ruben has brought with him. Here’s the ebullient Debbie Rich-Crane, who was last seen at the family counseling session eighteen months ago. She was Jeff Shaw’s demonstration wife, who used soda cans to illustrate the inheritance of the 185delAG mutation. Another of Shonnie’s first cousins, once removed, Debbie is very keen on her Jewish-Christian heritage. I left the Catholic Church as a teenager, she wrote in an e-mail, and am now a born-again Christian and know that the Jewish people are God’s CHOSEN PEOPLE! Wow, how great is this!!! She signed her e-mail A2J, short for Addicted to Jesus.
Next up is a teenager in a puffy pink sweatshirt named Najondine, who’s from a different branch of Shonnie’s family. She is with her anxious, pretty grandmother, Kathy. But Marianne Medina and Iona do not give a blood sample, maybe because they are occupied with serving food to the people at the back of the line, or maybe because the two just don’t want to participate. Iona will go to Colorado Springs for her BRCA test a few months hence, following her Auntie Wanda’s death. Yes, Wanda Kramer and her husband, Bill, are at the phlebotomy station now. Being Anglo, Bill can’t contribute blood to the study, but Wanda steps up willingly with her big, warm smile. When she turns and asks Bill her birth date, her forgetfulness seems strange. Her body and possibly her brain are riddled with cancer.
Harry was feeling great, he admitted afterward. Having brief, animated conversations with everyone who sat down, asking why they have come and what they hope to learn, not slowing as he maneuver
ed the syringes and capped the somberly glowing vials of blood, and then handing off the samples rapidly, without a glance behind him, just as on that pioneering day in 1975 when he tested hundreds of Jews in New York for the secret signature of Tay-Sachs disease.
Stanley Hordes, not to be outdone, worked the room. Seemingly without prompting, people would come up and tell him fragments of their pasts that could be construed as Jewish. True, he and his book had been introduced to the group at the beginning of the meeting. Some who were there knew about their Jewish heritage, Stan recalled. Some were comfortable with it. They’d say, There were always stories that our family used to be Jewish. Other people told me, You need to go talk to so-and-so.
During the lunch break Stan and Harry sat at a table together, their first occasion to meet each other. They traded information, casually showing their bona fides. Harry knew more about Jewish culture than Stan knew about Jewish genetics, but Stan would not be ruffled and pressed forward in his dogged manner, while Harry, who can be skittish with people he doesn’t know, turned aside some of Stan’s queries with a polite flutter of the eyelids. It was fun to see them together and hear them exchange stories. Both were good at wisecracks, Harry’s cutting deeper.
The blood-draw session wound down around 4 p.m. Harry and his assistants worked another hour going over the forms and assigning identification numbers to the samples, and as they worked, Iona and Bill sang karaoke songs toasting the success of the day. Stanley and his wife drove home to Albuquerque. Harry had a margarita and dinner at Lu’s Main Street Café in Blanca, up the road from Culebra, at the foot of the magic mountain, and afterward he went to the Walmart in Alamosa to buy a Styrofoam box for his DNA trove. At dawn the next day, he left the San Luis Valley, having done no skiing and no sightseeing except for a brief tour of the Stations of the Cross Shrine and the San Francisco church. He never said if he liked staying at El Convento.
The processing of the samples took time. In the summer of 2010, Harry sent a letter to the study participants with his preliminary analysis.
“The question of greatest interest to the community,” Harry wrote, “and the first one we tried to answer, is about the proportions of admixture. From testing your DNA we found that, on average, Hispanos are:
•European 50–60%
•Native American 30–40%
•West African 1–5%
•Non-European (Middle Eastern) 1–5%.”
The first three numbers were in line with previous studies of Hispanic groups. The detection of a Middle Eastern component in Hispanos was new.
But behind the scenes, Harry was a little disappointed because Jewishness had not jumped out of the DNA samples. Was it a question of not looking hard enough, he wondered, or not applying the right tests or markers? Or not getting the right ideas from his collaborators? Under the umbrella of his master project, “Origins and Migrations of Jewish Populations”, Harry tended to work inductively, feeling his way through the dark corridors of the data toward a scientific conclusion. He wasn’t really joking when he said that he liked to do the experiments first and then find a hypothesis that fit the results.
It’s like a journalist, he explained, who has to find the story. What’s the best way to tell that? What’s the story line? The Ostrer lab also was like the TV show House, with Harry in the role of Dr. House peppering his younger associates, making them sweat as they reached for the right diagnosis. We need new insights to improve the story, Harry said.
He decided to compare the Hispanos with a second group of Hispanics. In the Loja province of the southern highlands of Ecuador there lived a curious group of villagers, the Lojanos, who carry a recessive disorder called Laron syndrome. The effect of the gene is to severely stunt growth and cause other health problems. The mutation has a Jewish signature, presumably because converso ancestors of the carriers fled Lima in the seventeenth century, when the Inquisition was active. What’s more, Harry had been told that in the affected communities some people avoided pork and lit candles on Friday night, the kinds of stories Stanley heard about crypto-Jews in New Mexico. Although no one in Loja has claimed to be Jewish today, Laron syndrome in the inbred Andean colony might be a thread that if tugged would uncover a new trail of secret Jews in America.
So Harry obtained DNA samples from the local investigator of the Laron condition. He submitted the Hispano and Lojano DNA to more rigorous analyses than before and found his story line: an intriguing genetic overlap between two groups of Hispanics located thousands of miles apart. At least ten men had Middle Eastern Y chromosomes. When the Hispanos and Lojanos were compared with European groups, including Sephardic Jews, the two New World populations clustered closer to the Sephardic Jews than did any of the comparison populations.
The shared DNA, thanks possibly to a Jewish nexus in their past—that was the story that Harry and his colleagues published in the journal Human Genetics in 2011. The title of the article was “The Impact of Converso Jews on the Genomes of Modern Latin Americans.”
Harry’s scientific articles made news. He finished work on a book about Jewish genetics and helped organize a conference on the subject in Israel. With his career on the upswing, he moved from NYU to the Albert Einstein College of Medicine in the Bronx, New York, joining forces with high-powered specialists and becoming the director of the DNA laboratory there. Given that the Bronx’s population was half Hispanic and 6 percent Jewish, he planned to do more work on the Jewish origins of Latin American populations and to develop DNA tests of medical benefit to both groups. He turned sixty without slowing down or looking back.
After you have been a study-partner with someone for seven years, you don’t expect surprises at the end, but Harry did surprise me with a personal story about 185delAG. He too was touched by the gene. The mother of his longtime friend A—— had died of breast cancer when she was in her early forties. My life was changed by this woman’s death, Harry said, because afterward A—— was always around during his vacations from boarding school. He became very close to my parents and to my extended family. My life was enhanced by A——’s friendship.
Much later, a sibling in A——’s family, concerned about cancer, learned that he was positive for 185delAG. The test result not only explained the mother’s swift disease but also raised questions for A—— and his daughter, who found themselves in the same shaky boat as the Medinas and the Martinezes, two more people squeezing the rail of DNA analysis and looking over the side. They wanted to know yet dreaded to know.
The lesson, Harry said, is that genetics is an equalizer across socioeconomic lines. These [BRCA] mutations are common enough that they can have an impact. These people’s lives were changed, he repeated—meaning Shonnie’s Hispano family, A——’s Ashkenazi family, and Harry himself. And it wasn’t just a fortuitous or random inheritance of genes, Harry said. There are reasons for what happened. There are historical reasons.
Chapter 10
* * *
THE OBLIGATE CARRIER
And Aaron shall lay both his hands upon the head of a live goat and confess over it all the iniquities of the children of Israel—all their transgressions, all their sins, all put on the head of the goat. Then he shall send it away into the wilderness by the hand of a ready man.
—LEVITICUS 16:21
Before she discovered makeup, hair curlers, and the startling impact of her beauty, Shonnie Medina was a tomboy. She and Rod Gallegos, a childhood playmate from the Kingdom Hall, would chase sheep in the Vega, the common pastureland of Culebra, running after the annoyed beasts all afternoon. When Shonnie got older and learned to ride, she’d gallop on Hot Smoke through the same fields, or take off for hours into the foothills of la sierra.
She and Iona were happy go-getters, her aunt Lupita remembered. They were always wanting to learn things, and Joseph was always teaching them how to do things. He didn’t have boys but it was like they were boys
. Always riding and fishing, things of that nature.
She grew up bucking bales, her aunt Wanda remembered. Shonnie looked totally different when she was on the farm, wearing jeans and a baseball cap. She’d stuff her hair into the ballcap or put it in a ponytail. Later, when she was married, Shonnie was an equestrienne in full makeup who enjoyed teaching her young nieces to ride. Family friend George Casias said, I was privileged to see her at her peak—when she was being outdoorsy. She loved dogs and her horse.
Outdoorsy Shonnie was bolder and handier than the feminine Shonnie let on. Some of those moments when she was ditsy or klutzy might have been feigned. When she was nineteen, she and her sister went on vacation to Hawaii along with some other teens from the Jehovah’s Witnesses. Though she couldn’t swim, Shonnie got up on a rock with the boys, fifteen feet above the water, and jumped off, making a tremendous splash. After a frantic dog paddle to the shore, she climbed up and jumped off again. She was very determined, said Iona. She would do things by herself if no one wanted to come along.
If the showy, headstrong person of the previous chapters was modeled on Marianne, the outdoorsy, self-reliant Shonnie was the creation of her father. Joseph Medina was proficient at carpentry, plumbing, adobe-making, logging, lumber-milling, woodworking, masonry, and engine repair, not to mention guitar-playing and singing. Joseph hoped that his girls would acquire as many of his skills as possible, in case something should happen to him and they had to go into the world alone. But of course they inherited more than that; their lot was as unlucky as his in regard to the 185delAG mutation. The gene that had passed from Andrellita to Dorothy to Joseph was transmitted to Shonnie, the one thing he couldn’t protect her from. He never found out that Iona was positive too.