by admin | May 15, 2006 3:42 pm
Who are you?
What makes you who you are? Really. Is it God? Nature? Chance or science? Do you know where you come from? You should know. You must know, because these are the most important questions of our time. We are at the dawn of an age when life can be created in a dish, when sex and health and personality can be determined with a syringe–when you can decide, literally for God's sake, to give your child blond hair, the ability to play the flute, a face like yours, or a voice that's exactly like your dead wife's. How far will you go to ensure that your child is disease- and pain-free? Smart? Able to throw a baseball? How far will you go to ensure your child is like you? You need to have an answer. You must decide what it all means for you. And you will have to answer for your decisions–or lack of decisions.
“Genes will determine everything.” He's only just begun his late-February guest lecture at Princeton, and already University of Pennsylvania bioethicist Glenn McGee has dazzled a room full of undergrads into stunned silence. Just 35 years old, McGee is one of the country's most outspoken young thinkers on reproductive technology, like cloning, gene research and dna modification. And onstage, he is doing what he's best known for: Helping the general public understand the sci-fi world of genomes and clones and stem cells–which, of course, isn't science fiction anymore. Doughy and baby-faced, he paces, shouts, waves his arms. In a mad rush of words, he swoops through a tangle of tangents–from downloading music, to an article in the Atlantic Monthly, to the war in Iraq–and throws out ominous pronouncements that seem somehow less frightening in his gentle Texas drawl. He tells of meeting with Arab businessmen who have considered buying up the rights to all the embryonic stem cells in America as an investment. (“It would only take 90 minutes of pumping oil to get the money.”) Of the commercial possibilities of genetic information. (“Nike will come out with a Just Do It shoe just for you.”) Of the painful truths that will be revealed. (“More than 90 percent of people who use sperm donors lie to their kids. So many of you in this room will learn that your daddy is not your daddy.”)
McGee, as he has in his eight years as a professor at Penn's Center for Bioethics, is translating, turning medical mumbo-jumbo into a language that the Ph.D.-less among us can understandóand that he insists we need to understand. “We need to discuss the ethical implications of what we're doing,” he says. “People need to be informed to make decisions.” He circles back to the question he's been asked to discuss–the question, he would say, that is before all of us: What does it mean to be human? But he won't answer it, exactly–not like a scientist, who might break life down to its cellular parts; or like a true believer, who would rely on the intangible of a higher power. He will only raise the issues he believes his audience should be thinking about. What makes us human? What makes us who we are? Is it the lessons of our childhood? The sins of our fathers? Is it the dna that swirls in our cells, that we can analyze for future diseases and–maybe two years from now–download to our Palm Pilots? McGee poses these questions constantly–in speeches, in classrooms, in interviews, in his monthly magazine, on his website. Even in his own life.
What makes Glenn McGee who he is? That, it turns out, is the hardest question McGee has ever raised. He'd always been so sure of himself–as a husband, a father, a son. He always thought he knew who he was. Then, he learned the truth.
On an early evening in 1998, Glenn McGee answered the phone to hear the voice of a woman he'd wondered about his whole life, but never met: his mother. More than 31 years after giving him up for adoption in Texas, she'd found him in Philadelphia through a detective. Now, she told him on the phone, she wanted to know who he was.
McGee always knew he was adopted, the way he always knew that his dark hair and slightly olive skin were different from his parents–and, for that matter, from his blond, blue-eyed younger sister, who was also adopted. He grew up thinking he'd won the parent lottery: a botanist mother and a bioethicist father–one of the first in the country–who raised him on the Waco, Texas, campus of Baylor University, the perfect place for an intensely curious little boy. “Even when he was young, Glenn spent a lot of time thinking about his place in the world and in his family,” says his father, Dan McGee. “He never took it for granted, like other kids might.”
Yet suddenly–unexpectedly–McGee was on the phone with his real mother. Stunned, he forgot all the things he'd always intended to tell her–that he was okay, had a good life, not to worry. Instead, for the first time in his life, he was desperate for answers. “Tell me about my father,” he begged her. So she did: They'd gone to high school together. They'd been friends. And then he'd raped her.
He'd raped her. The words ricocheted through McGee's brain, making no sense at first, then sinking in with a dull thud. As a child, even as a young adult, McGee had imagined that one day he would find his genetic mother, and that she would be someone amazing. Instead, he found her rather ordinary. But he'd never given any thought to his father, who became more and more of a mystery the more he was described: He was a car dealer in Dallas. He was Jewish. He wanted nothing to do with his illegitimate son. And, his mother said, he looked just like pictures she'd seen of McGee on Penn's website. He hung up the phone, suddenly lost.
“If my dad's a rapist,” he wondered, “what does that make me?”
Subsequent calls and e-mails from his mother–notes telling him she'd seen him on TV, or asking how he was–sent him to a therapist in tears and left him almost paralyzed at the office. The issues he was struggling with were too similar to those he asks professionally, and McGee didn't want those two worlds to overlap. He had never mentioned his adoption in his work. He'd always feared becoming the sort of academic whose career is based solely on his personal obsessions–the way an ethicist he once knew wrote only about long-term illness because she had MS. “I write as much about reproductive issues as anyone else, but I try to be self-aware,” McGee explains. “I don't want to spend my life forever elucidating more clearly one question that also happens to be one of my own problems. I don't want to be the sort of person bogged down by the personal.”
But whatever distance McGee had kept between his personal and professional selves had disappeared with one phone call. He could no longer think about reproductive genetics without also thinking about what his genes might say about him. He could no longer write about cloning and adoption without eventually disclosing his own alternative upbringing. He could no longer lecture on the kinds of questions facing parents when they enter a lab without facing his own staggering dilemmas: How do I tell my parents about this? Should I invite this woman into my life? Should I send her pictures of her grandson, or Christmas cards? Should I be celebrating Hanukkah instead? What does this say about me–a divorcÈ with a long-distance son; a new husband to Monica, a Philadelphia nurse-practitioner; a son to Dan and Merolyn McGee–and now to a rapist?
Finally, one morning, McGee awoke in a panic, wondering if he was going to have to switch careers. “How can I continue to do something that causes me so much pain?” he lamented. “How can I keep doing this without becoming what I hate?”
How do we become who we are? What does our dna say about us? What does the mapping of the human genome mean for each of us, personally and collectively? How far should we go to make the “perfect baby?” How far is too far?
McGee had been grappling with the big genetic issues long before he discovered the truth about his own genes–almost as if he knew, somewhere deep in his dna, that there were important questions about his own genetic makeup that needed to be answered. McGee believes ethicists are drawn to issues that are problematic to them personally, and he's always been troubled by the choices parents make about their children. In the introduction to his forthcoming book, Beyond Genetics: Putting the Power of DNA to Work in Your Life, McGee recalls the embarrassment of being different from his classmates at a time when the study of genetics was first cropping up in the classroom. “I hated my first biology class,” he writes. “My friends would perk up as the teacher walked us through the biology of 1981, an introduction to the scientific reasons why offspring looked or behaved the way they did. But I wasn't having any of it. The older kids set me straight about the facts: Adopted kids' families were fake.”
As a rebellious adolescent, McGee swore he would never follow in his father's footsteps to a career in bioethics. But as a philosophy graduate student at Vanderbilt University–where he wrapped up his Ph.D. and a master's in just three years, while teaching full-time–he decided that ethics was the only true American philosophy. “Bioethics deals with life-and-death problems people face everyday–not just the great philosophical musings about life and death,” McGee says. And solving the problems he raises–like what to do about stem cells–is tantamount to deciding the future of medicine, the future of having babies and of aging. If, for example, we decide to keep the government completely out of the lab, as some scientists propose, we could face an unregulated industry that, like in-vitro fertilization clinics, has no consumer standards. On the other hand, if we decide to ban all embryonic research, which uses material from embryos either made in the lab or culled from clinics, we could slow the valuable progress we've made in finding cures for Parkinson's and Alzheimer's. McGee searches for a road between the two extremes. “It's one thing to think about finding a treatment for Parkinson's,” he says, “and another to use the technology for cosmetics. As a bioethicist, I am supposed to make sure that human inquiry into medicine and science does not leave human values behind.”
McGee arrived at Penn in 1995, a 27-year-old whirlwind of Texas swagger and self-possession, so sure of himself when he applied for the job that he wrote in a letter to Center for Bioethics director Arthur Caplan that he “belonged” at Penn. His overconfidence almost made Caplan turn him away. But McGee was right, of course–his interest in engaging the public as much as possible, via TV, newspapers, the Internet and the lecture circuit, made him a perfect fit with his renowned boss. He became a regular commentator on cnn and npr almost anytime there was news about stem-cell research or cloning–like last December, when he spent nearly an entire day on the air doubting the Raelians' claim that they'd cloned a baby. McGee's dissertation became his first, widely read book: The Perfect Baby: Parenthood in the New World of Cloning and Genetics, an accessible, mass-marketed exploration into the risks and benefits of a world in which we can create babies in our own image through what we learn in genetic testing. Beyond Genetics, which comes out in October, picks up where the first book left off: in a post-Dolly, post-human genome world in which, as McGee puts it, “It is time for new rules.”
In Beyond Genetics, McGee recalls walking along a pier with two Texas friends, whom he calls Karen and Roger, after Karen had been diagnosed with tumors in one breast and had tested positive in a genetic screening for the brca-1 mutation, which has been linked to breast cancer. The couple told McGee that they had spent months preparing themselves for the test, hoping the results would ease them of worries about Karen's future. Instead, Karen fell into a panic of “self-mutilation”–removing both breasts and ovaries to avoid getting sick. McGee found himself at a loss for words as Roger cried that the “prevention was worse than the cure,” and then gave him more bad news: Karen still had cancer in her lymph nodes. “Things in her life were moving very fast and eroding,” McGee writes. “It was a perfect metaphor for the dilemma of genetic testing.”
His approach to these dilemmas often puts him in the middle of the most contentious issues in bioethics. At a Marquette University conference on stem cells last year, McGee sat through hours of lectures from theologians, some of whom contended that non-embryonic stem cells–those taken from living adults–were just as useful in research as those taken from early-stage embryos. Then he listened while scientists boasted about their success with embryo research and denied that they were killing anything in the process. By the time it was McGee's turn to take the lectern before a room of scientists, philosophers and most of Wisconsin's bishops, he'd had it with everyone. He turned to the scientists–the men whose research he supports–and admonished them for exaggerating their progress to raise stock prices, for denying that their work destroyed something, and for ignoring the dangerous paths down which their research could lead. Then he put up a slide that read “The Big Lie” and turned to the religious ethicists. “The claim that adult stem cells are better is a lie,” he said. “The data isn't there Ö and it will only delay the debate.”
“He managed to offend everyone,” recalls Richard Doerflinger, a pro-life policy analyst for the U.S. Conference of Catholic Bishops. “He has a reputation for forthrightness and candor. I think he also delights in a little outrage.” McGee's manner–and his youth–sometimes rankles colleagues, many of whom think he is too inexperienced to be such a showman. But it is also part of his appeal, what makes him a popular teacher and lecturer who demands only one thing from his audience: action. His best-known class at Penn is a small seminar that gets even smaller after the first meeting, when McGee tells students that in order to get an A they must write bills regulating stem-cell research, and then convince legislators in their home states to submit them. (McGee says there are 24 laws in the country that originated in his class.) And the same thing happens in Connecticut twice a year, when McGee is invited to talk at an Episcopal Church-sponsored conference of priests. “Before I start,” he says from the podium, “each of you must promise to give 10 sermons on reproductive technologies in the coming year.” Then, after more than half the room clears out, he issues a warning: “You're the ones parents will turn to for advice when they're facing dilemmas about their children. This is not going to go away.”
A few months after she found him in 1998, McGee's birth mother e-mailed him to say she was moving to Arizona and might be out of touch for a while. Then she never contacted him again, leaving McGee with the feelings he has yet to resolve, the questions he hadn't yet asked: What should I know about my health, about my family? What is my father really like? Is he like me? Do I really want to know?
For nearly a year, McGee seemed on the verge of a total breakdown, so depressed and lost that Monica McGee worried he'd end up a different person from the one she'd married just a few months before his mother called. At work, where McGee slowly started telling colleagues what had happened, he seemed changed, in simple but critical ways. “Before, he would have described himself as a beer-drinking Texan from Waco,” says Art Caplan, his boss. “That seemed to wane, to become less important to him.” After his mother disappeared again, McGee continued to struggle with his genetic past, never quite daring to look for her, never quite abandoning the idea of finding his father. On every trip home to Texas with Monica and their two young sons, McGee still pulls out of the airport with an anxious glance at the turnoff for the miles-long row of Dallas car lots. He jokes to his wife that they should find his father, to see what he looks like and make sure she'll still want to be with him when he's 60. But seriously, McGee wonders: Should I look for him, driving to each lot until I spot a man I recognize? Should I confront him? Should I just watch him, see if I can find myself in him?
Over the past year or so, McGee has finally begun talking publicly about his adoption. He still rarely discusses his “real” mother, or her revelations, or his angst–though in a sense, that's what he's talking about when he warns that children will find hidden truths about their heritage when they learn their genetic makeup. McGee has also joined the boards of Planned Parenthood and a national adoption think tank, positions that he says make him feel like he's “healthy”–though he says it with a wry laugh that implies he's not, really. Still, the small encroachments of the personal into his professional life are signs that McGee has let a wall drop, that he's admitting it's okay to let his experience color his perceptions of parenting and childbearing and genetics–that after all, it's only human to be influenced by his past. “I've felt a little culpable about not writing about my adoption,” McGee says in his office, surrounded by the clutter of an academic technology geek: shelves of philosophy and ethics books; two laptops and a cell phone that plays Dave Matthews's “Satellite” when his wife calls; a two-foot r2d2 tape player. “Now I do talk about it–I finally feel like I can, a little. I mean, maybe it's important for people to know where I'm coming from.”
McGee spent most of his life never knowing where he came from, what it was like to see himself in another person, the way genetic children can point out which parent gave them their wavy hair or blue eyes or chubby cheeks. But as he struggled to define who he was after his mother's revelations, McGee started to notice something he'd never seen before: himself, in his oldest son, Ethan. Just three years old in 1998, Ethan lived mostly in Arkansas, with McGee's first wife. But on every visit, McGee learned more about himself from Ethan. Pictures of McGee as a child looked exactly like Ethan, almost as though he was a clone. McGee recognized his own youthful distraction in Ethan's attention deficit disorder. The mischief he got into as an adolescent, he could anticipate for his son. He could now let go of some of the worry about what he might have inherited from his father, because he could actually see his genes walking around in another human being. He could finally see himself. And he understood the power of genetics, in a real way, for the first time.
Source URL: http://www.phillymag.com/articles/2006/05/15/the-born-identity/
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