Beacon Broadside

Happy Father’s Day!

Today's post is from Jeremy Adam Smith. Smith is a contributing editor to Greater Good magazine, an editor for Shareable.net, and is the founder of Daddy Dialectic, a group blog by and about dads who embrace caregiving and egalitarian relationships. Smith is also the author of The Daddy Shift, the coeditor of The Compassionate Instinct, and coeditor of Beacon's forthcoming book, Are We Born Racist? He blogs about the politics of parenting at Mothering.com, where a different version of this post originally appeared on June 10th as part of his series: "25 Ways for Dads to Change the World."

"Last month my son and I were playing with his friend Oliver (not his real name) when Oliver had a seizure.

It came at me sideways; his scream possessed a rattling amplified quality, as though it were coming through an old speaker, and I saw his little body flex and seize out of the corner of my eye. I knew Oliver had epilepsy (as well as other difficulties) but I confess I needed an agonizingly eternal five seconds to understand what was happening. I was knocked out of my momentary paralysis by Oliver's mom, who leapt over to him and shouted at me to call 911. Even in the moment, some part of my mind murmured to me a reminder that I had been spared watching my child go through what Oliver was going through."

To continue reading, please visit Mothering.com.

Link Roundup: Weekend Listening

If you are reading this in Massachusetts or Maine, odds are good you're enjoying a three-day weekend thanks to Patriots' Day, which our history editor explains involves something historic, but many Bostonians understand to be the day everyone watches the Boston Marathon. Even if you are reading outside the region, we hope you enjoy these recent media appearances by Beacon Press authors et al:

On "The View," the ladies talk to the Trebing family about their quest for a donor sibling to help heal their daughter, a moving true story veteran journalist Beth Whitehouse tells in her new book The Match.

Listen to Fred Pearce discuss The Coming Population Crash on WNYC's "The Brian Lehrer Show."

Dana Sachs joins NPR's "Talk of the Nation" host Neal Conan to discuss Operation Babylift and how, in 1975, the U.S. government airlifted nearly 3,000 displaced children out of wartime Vietnam.

A Beacon Press editor related to the pink bird in the intro of "The Dylan Ratigan Show" recommends this Story Pirates video on financial deregulation. “This,” she says, “is what I call educational programming.”

Beth Whitehouse: Excerpt from The Match: “Savior Siblings” and One Family’s Battle to Heal Their Daughter

Today's post is an excerpt from a new book by Pulitzer Prize-winning Newsday reporter Beth Whitehouse. Her five-part front-page series "The Match," which was the basis for this book, won numerous awards, including the American Association of Sunday and Feature Writers First Place for Narrative Writing, a National Association of Science Writers Award, and a Casey Medal for Meritorious Journalism in Service to Children. Whitehouse is an adjunct professor of journalism at Columbia University.

Beth Whitehouse appeared on the Diane Rehm show this morning to discuss savior siblings and The Match. You can listen via the show's podcast.

May 24, 2006

Stacy Trebing yanked off the yellow paper hospital gown that covered her shorts and T-shirt, unhooked the surgical mask from behind her ears, and stuffed both items into the garbage pail in the entryway of her daughter's hospital room. She'd been at her three year-old daughter's bedside practically every minute of the past ten days.

She needed a breather.

The next morning, Stacy's daughter would have a bone marrow transplant, a medical procedure that would either cure her or kill her. Every minute since Katie's birth had been leading to this day. Everything Stacy and her husband, Steve, had done, every decision they'd made, had propelled them here.

Including the most controversial of their choices: to create a new human being they had selected as an embryo because he genetically matched a critical portion of his sister's DNA.

That one-year-old baby would be brought into the hospital the following morning to donate the life-changing bone marrow that was the only chance to heal his sister. Christopher Trebing was born to be a member of the Trebing family, but he was also born with a job to do. He would be put under general anesthesia while a doctor inserted needles repeatedly into his hips and siphoned the tissue that could repair Katie's ailing body.

Read more on Scribd.

An excerpt from The Match: "Savior Siblings" and One Family's Battle to Heal Their Daughter by Beth Whitehouse

Video: Bruce Rich on Universal Health Care in Ancient India

In To Uphold the World: A Call for a New Global Ethic from Ancient India, author Bruce Rich contemplates the rule of the Indian emperor Ashoka over 2,200 years ago, whose philosophy of tolerance, conservation, nonviolence, species protection, and human rights still have much to teach us today. One of the many programs established by Ashoka was a system of universal health care for people and animals which, once established, served the Indian empire for close to a millennium. Rich discusses Ashoka's health care system in this video. 

Bruce Rich is a Washington DC based attorney who has served as senior counsel on international finance and development issues for major environmental organizations such as the Environmental Defense Fund and the Natural Resources Defense Council. Rich has published extensively in environmental and policy journals, as well as in newspapers and magazines such as The Financial Times, The Nation and The Ecologist. He is the author of Mortgaging the Earth, a widely acclaimed critique of the World Bank and reflection on the philosophical and historical evolution of the project of economic development in the West. He has been awarded the United Nations Environment Program 'Global 500 Award,' the highest environmental prize of the United Nations, in 1988, and also won the World Hunger Media Award in that year for the best periodical piece on development issues.

Big Think Interview with Jonathan Metzl

Jonathan Metzl discusses schizophrenia, the DSM (The Diagnostic and Statistical Manual of Mental Disorders), and how the disease moved from being thought of as a ailment of housewives to a diagnosis of violent behavior among African-American men.

If the video doesn't embed in your reader, check it out here: http://bigthink.com/ideas/18711

Danielle Ofri: Doctor-Writers: What Are the Ethics?

Danielle Ofri is a writer and practicing internist at New York City’s Bellevue Hospital. She is the editor-in-chief of the Bellevue Literary Review. Her newest book is Medicine in Translation: Journeys with my Patients (View the YouTube book trailer.) You can follow Danielle on Twitter and Facebook, or visit her homepage.

There is a veritable epidemic of doctor-writers out there. What is going on?

Are doctors suddenly in the kiss-and-tell mode? What about confidentiality? Professionalism? HIPAA?

As one of the aforementioned doctor-writers, I look upon this trend with both awe and trepidation.  I suspect that that this flourishing literary phenomenon relates to the public’s fascination and fear about all things medical. It also relates to the falling away of previous, pedestal-like images of doctors and doctoring. Lastly, it may have occurred to the medical profession-- and this has taken a few centuries, it seems-- that doctors have profound emotional reactions to the work we do, and that exploring these reactions may offer benefit to both patient and doctor.

Whatever the reason, this literary genre appears to be here to stay, and it is worth considering the ethical implications. Legally, there doesn't appear to be much beyond protecting identity and avoiding libel.

Jonathan M. Metzl: In Medical Records, a Story of the Racialization of Schizophrenia

Today's post is an excerpt from The Protest Psychosis: How Schizophrenia Became a Black Disease by Jonathan M. Metzl. Metzl is associate professor of psychiatry and women's studies and director of the Culture, Health, and Medicine Program at the University of Michigan. A 2008 Guggenheim Fellowship recipient, Metzl has written extensively for medical, psychiatry, and popular publications. His books include Prozac on the Couch and Difference and Identity in Medicine. 

Reading the medical charts of the patients of Ionia State Hospital for the Criminally Insane, I felt a mixture of responsibility and deep sadness. For better and largely for worse, the Ionia charts documented the lives of the marginalized and the forgotten in novel-like detail, and in ways that made the medical records of today seem impersonal and flat. This was because the charts recorded people in two conflicting ways: in their roles as patients and convicts, as defined by interactions with the state hospital complex and the courts, and in their roles as sons, daughters, fathers, husbands, wives, or loners, as defined by letters, cards, and other texts. The charts also documented in minute detail the tragedy of what it meant to be warehoused in a state asylum at midcentury -- and in particular, in an asylum where short sentences devolved into lifelong incarceration. A number of charts contained yearly notes from patients to their doctors voicing such sentiments as "Doc, I really think I am cured," or "Dear Doctor, I believe I am ready to go home," or "You have no right to keep me here after my sentence is over." These letters stacked thirty deep in some charts, signifying years of pleading and longing and anger, together with thirty years' of responses from clinicians urging, "You are almost there" or "Perhaps next year." Invariably, the last note in each stack was a death certificate from the Ionia coroner.

I visited the archive regularly over the next four years. With the help of my research assistant, I analyzed and catalogued hospital administrative records and the charts of nearly six hundred randomly selected patients admitted to the hospital between the late 1920s and the early 1970s, under the agreement that I significantly alter all personal identifying information about patients, as I have done in the case descriptions that appear in this book. Names, dates, and places have been changed, and vignettes represent condensed and extrapolated aggregates drawn from the rich case materials. All doctor-patient dialogue and text in quotation marks is reproduced verbatim. I also visited Ionia on numerous occasions and conducted a series of oral histories with surviving members of the hospital staff, though, perhaps tellingly, I located no surviving patients despite numerous attempts.

What stories boxes tell. Ionia was its own planet, walled off, orbiting, a place where real people worked and lived and died. Then came a series of public scandals, the advent of psychopharmaceuticals, and changes in legal systems and penal codes. Decreased public funding followed, along with encroachment by regional forensic centers. Finally, the transformation. The boxes were but light-years of this implosion, vapor trails, found poems, measurable heat. Disembodied voices that told silent stories of what it meant to be incarcerated, or neglected, or entrenched, or immured.

Link Roundup: Sri Lanka, Schizophrenia, The Abortion Wars

The Sri Lankan election is tomorrow, and the Toronto Star spoke with Adele Barker about the tensions and bitterness of the contest.

African-American men are diagnosed with schizophrenia at rates four to five times more than other groups. The Root talked with Jonathan Metzl about this issue and his new book, The Protest Psychosis.

Sophia Raday is now blogging at Military.com, contributing posts about her politically-mixed marriage.

Carole Joffe discusses the Abortion Wars with Salon.com.

The authors of Hollowing Out the Middle look at an Endangered Species: the American Heartland.

CNN Newsroom featured a live interview with Sonia Sanchez on Sunday. The five minute interview focused on the Smithsonian's Freedom's Sisters traveling exhibit, which features Sonia Sanchez and nineteen other 19th and 20th century African-American female activists. The video is embedded here, but if it doesn't appear, you can follow this link.

Danielle Ofri: In Praise of Public Hospitals

Today's post is from Danielle Ofri, a writer and practicing internist at New York City's Bellevue Hospital. She is the editor-in-chief of the Bellevue Literary Review. Her newest book is Medicine in Translation: Journeys with my Patients. You can follow Danielle on Twitter and Facebook, or visit her homepage. This post originally appeared on her Medicine in Translation blog at Psychology Today.

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Public hospitals have a bad rap. They're viewed by many as hospitals of last resort, and most patients with private insurance do anything to avoid them.

As a long-time physician in a public hospital, I'm sensitive to this reputation. I wouldn't work in my hospital if I didn't feel that it delivered excellent health care. I'm certainly aware that private hospitals have amenities that public hospitals can't afford, but many of these are cosmetic issues.

On the cosmetic side, though, public hospitals have come a long way. Bellevue Hospital, where I work, has built a gorgeous ambulatory care building, complete with a soaring atrium that floods the waiting areas with sun and space. The ICUs and emergency wards have been renovated to enviable standards.

But beyond cosmetics, there is an extremely dedicated staff who is committed to providing high-quality care, despite the many financial and logistic challenges that public hospitals face.

Rev. Marilyn Sewell: Should I Have My Next Mammogram?

Today's post is from Marilyn Sewell, Minister Emerita at the First Unitarian Church in Portland, Oregon. Sewell is the author of Breaking Free: Women of Spirit at Mid-Life and Beyond and Resurrecting Grace: Remembering Catholic Childhood, and the editor of two collections of poetry, Claiming The Spirit Within: A Sourcebook of Women's Poetry and Cries of the Spirit: More Than 300 Poems in Celebration of Women's Spirituality. This post also appeared on her personal blog.

I got a call from Kaiser Permanente several days ago informing me that I was due for my yearly mammogram. That call came the day before I saw the headline in the New York Times telling me that having a test every other year is now the recommendation from the U.S. Preventive Services Task Force for a woman my age. Besides, they say, nevermind the breast self-exam, or even the exam by my primary care physician. None of this is going to save my life. Statistically, anyway. And besides, more frequent exams may lead me to extreme anxiety when a lump is found that turns out to be benign (which has happened 2 or 3 times already), and I may be subjected to unnecessary treatment for an early-stage cancer which might have gone away on its own-- unnecessary treatment being more tests, and perhaps radiation and/or chemotherapy, and even surgery. Whoa! What should a woman do?

Danielle Ofri: Humanizing Medicine: The Small Details

Today's post is from Danielle Ofri, writer and practicing internist at New York City's Bellevue Hospital. She is the editor-in-chief of the Bellevue Literary Review. Her newest book is Medicine in Translation: Journeys with my Patients. This post originally appeared at her Medicine in Translation blog at Psychology Today.

"Angelina Gomez," the medical assistant hollers out to the crowded waiting room. As always, I cringe when I hear this. It sounds so harsh, so cattle-like. I know that the assistant is actually a gentle and caring person, and I understand that he uses a loud voice so that he can be heard over the general din of a large waiting room.

Nevertheless it feels horrible to me, so demeaning, like we're in the DMV instead of a medical clinic. I want the environment to be more humane, more civilized, and so when I go out to call a patient, I use a much softer voice, with a tone that I hope conveys more respect.

Of course, no one can hear me. Heads turn, ears strain, faces contort as people try to figure out who I am calling. The medical assistant usually gets the right person on the first try. I, on the other hand, end up pacing up and down the waiting room repeating the name. Am I making the environment any better?

Danielle Ofri: Translating the Foreign Culture of Medicine

Today's post is from Danielle Ofri, writer and practicing internist at New York City's Bellevue Hospital. She is the editor-in-chief of the Bellevue Literary Review. Her newest book is Medicine in Translation: Journeys with my Patients. This post originally appeared at her Medicine in Translation blog at Psychology Today.

If asked what a doctor does, most people would probably come up with the standard description of diagnosing and treating disease, usually while wearing an ill-fitting white coat. Before I entered practice, even during my medical training that probably would have been my answer too.

But my years in the trenches of real medicine have altered that definition greatly. I do spend time doing the things I learned in medical school like diagnosing disease and writing prescriptions, but that turns out to be only a part of the job, often a very small part.

Much of the time I find myself acting as sounding board. Recently I saw one my regular patients, a woman whose main medical issue is hypertension. But for most of our visit she spoke, often tearfully, of the strain of raising grandchildren since her daughter died of HIV. We never really got to her hypertension, and I certainly didn't have any easy answers for her difficult life situation, but this seemed to be the only time and place that she could devote to her own issues.

A good portion of my time is spent being a teacher. So much of medicine involves education-- talking about what a disease means, which medication side effects are important to watch for, how to plan a healthy diet, which screening tests are important, what a particular diagnostic test entails, what the various lab results mean, and so on.

Patricia Harman: My Calling to Midwifery (Celebrating National Midwifery Week)

Today's post, in honor of National Midwifery Week, is from Patricia Harman, author of The Blue Cotton Gown: A Midwife's Memoir. Harman got her start as a lay-midwife on the rural communes where she lived in the '60s and '70s, going on to become a nurse-midwife on the faculty of Ohio State University, Case Western Reserve University, and West Virginia University. She lives and works near Morgantown, West Virginia, and has three sons.

As I travel around the country speaking and signing copies of The Blue Cotton Gown: A Midwife's Memoir, I spend more time talking about midwifery than I do about the book. This makes me smile; I didn’t set out to be an ambassador for the profession, but I couldn't be more pleased.

I am surprised that most people don’t know that, worldwide, roughly 70% of babies are born into the hands of midwives; they don’t know that in the US the numbers are growing, almost 10%, up from 3% ten years ago. I’m surprised when they don’t know that midwives are legal in all 50 states and that most practice in the hospital in collaboration with physicians. I'm surprised that they don't realize that there are two kinds of midwives: the nurse-midwife is an advanced practice provider, usually with a Masters degree, who can do deliveries in the hospital, a birthing center or at home, prescribe medication, and is also trained to do gynecology. The direct entry midwife trains by apprenticeship and delivers, usually at home. I was both kinds.

David W. Moore: Those Bobbleheaded Polls on Health Care

Today's post is from David W. Moore, author of The Opinion Makers: An Insider Exposes the Truth Behind the Polls (out in hardcover now, paperback with a new afterword available this fall). Moore is a senior fellow of the Carsey Institute at the University of New Hampshire, and he is a former senior editor of the Gallup Poll, where he worked for thirteen years. He frequently contributes to Huffington Post, and blogs at SkepticalPollster.com, where this post also appeared.

A recent series of polls brings to mind a bobblehead doll, whose head wags from side to side and from front to back in a random fashion. That disconnected movement seems to be a visual representation of what the polls have been saying about the general public and its views of President Obama's efforts to reform the health care system.

Before the president's nationally televised speech to a joint session of Congress earlier this month, for example, several polls announced that either a majority or plurality of Americans disapproved of the president's performance on health care. They didn't tell us if the people were dissatisfied because he was trying to do too much, or because he wasn't trying to do enough. All we got was the dismal information about how the public felt let down by the president.

Then, on the Friday after Obama's speech, a CBS poll declared that the public had rallied in favor of the president. A majority of the public now approved of his handling of health care by a 14-point margin, compared to a week earlier when a plurality disapproved by a 7-point margin. That represented a 21-point swing in opinion, which is no mean feat for one speech. (For all poll results, see pollingreport.com.)

Jennifer Culkin: Nurses on Television Miss the Mark

Today's post is from Jennifer Culkin, author of A Final Arc of Sky: A Memoir of Critical Care. Culkin, winner of a 2008 Rona Jaffe Foundation Award, is a writer and longtime neonatal, pediatric, and adult critical care nurse. Her work has appeared in many literary magazines, including the Georgia Review and Utne Reader, and in the anthologies Stories with Grace and The Jack Straw Writers Anthology 2006.

I'm so confused. To judge by two current television series about nurses, TNT’s HawthoRNe and Showtime's Nurse Jackie, are we nurses angels or 'hos? Self-righteous, micromanaging do-gooders in lab coats, or adulterous, vigilante prescription-drug addicts in scrubs? Granted, Jackie comes off as intelligent and realistic. Her black humor feels right. But how does she find time for lunch at a restaurant, let alone the sort of restaurant that has wine glasses on the table? And how, during the course of her shift, does she manage a roll in the hay with a hospital pharmacist? There are days I don't have time for a drink of water. I want to work where she works!

Except I'm not into narcotics, and certainly wouldn't use (Snort! Now there's a nice touch... and it's so lovingly filmed) them at work. Thirty years ago, when I was young and clueless, I sometimes had a glass of wine with lunch at noon before a shift that began at 3 PM. Now I'd never do that, and neither would the vast majority of nurses I know. My patients, like other consumers, have a right to expect that I'll save the wine for my time off. That I'll care for them unimpaired.

And then there is Christina HawthoRNe. I suppose it's a good thing that the public sees there IS such a thing as a chief nursing officer, that nursing is an independent profession with its own management hierarchy and that the CNO is a high-level administrator with her share of clout in the organization. But despite 30 years as a critical-care nurse, I have yet to see one charging around so ostentatiously, setting everyone straight: other hospital administrators, the Emergency Department nurses, her own daughter, a patient and his MD father. The disappointing bottom line is, Christina isn't any more realistic than... a TV doctor.

David W. Moore: Obama, the Public, and Health Care

Today's post is from David W. Moore, author of The Opinion Makers: An Insider Exposes the Truth Behind the Polls (out in hardcover now, paperback with a new afterword available this fall). Moore is a senior fellow of the Carsey Institute at the University of New Hampshire. A former senior editor of the Gallup Poll, where he worked for thirteen years, Moore also served as professor of political science at UNH and is the founder and former director of the UNH Survey Center.

A recent ABC/Washington Post poll reported slipping support for President Obama's efforts to reform health care. In April of this year, polls showed 57 percent approval to 29 percent disapproval of the way the president is handling health care, compared to a 49 percent to 44 percent ratio in mid-July. That's an 8-point decline in approval and a 15-point increase in disapproval.

The same poll also showed that, by a 55 percent to 43 percent margin, Americans support a health care reform plan that is roughly what the president is requesting.

What's going on? If Americans support the president's health care plan, and it is now that he is pushing the Congress to pass legislation enacting reform, why is the president's popularity on this issue declining?

The public's growing disenchantment is especially surprising, because last April the president was hardly focused on health care at all, his attention mostly on getting a stimulus bill passed through Congress. Yet, if we believe the polls, his approval on health care was higher when he was not fully engaged in getting health care legislation passed (which the public wants) than when he is fully engaged!

Patricia Harman: Morgantown's Been Down So Long It Looks Like Up To Me

Today's post is from Patricia Harman, author of The Blue Cotton Gown: A Midwife's Memoir. Harman got her start as a lay-midwife on the rural communes where she lived in the '60s and '70s, going on to become a nurse-midwife on the faculty of Ohio State University, Case Western Reserve University, and West Virginia University. She lives and works near Morgantown, West Virginia, and has three sons. In the interest of privacy, the names and some identifying details of the women she discusses in this post have been changed.

West Virginia has a reputation for being nearly the worst for everything in the US, except for the beautiful scenery. We Mountaineers have the 4th highest poverty rate in the United States: 16.9%, equal with Alabama and just slightly better than Kentucky, Mississippi, New Mexico and Louisiana.

I was, therefore, astounded when NBC Nightly Newsfeatured our hometown, Morgantown, WV (poverty level 27.7%), as having the lowest unemployment rate (2.7%) in the nation in this past December's survey. (The rate has since risen, but we're still among the lowest in the country.) As a nurse-midwife and women's healthcare provider in a private clinic, I see life through the eyes of my patients. If we're doing well, it must be catastrophic everywhere else.

Molly McDonald sits on the guest chair in my exam room. She's a 28- year-old housekeeper at the hospital. There are tears in her green eyes. "I don't know what's going on," she tells me. "Ever since I went back to work, I can't quit crying. I love my job, don't get me wrong and I'm grateful to have one, especially since Leonard got laid off at the sawmill… New home building has slowed and they ain't selling much lumber."

"How old are your kids?" I ask sympathetically.

"Just four months and three. Leonard's at home with them now but he's drinking and in my face all the time, complaining that I don't give him much love. But I'm just so tired…" The patient trails off and stares at the white cupboards over the sink. "I'm just so tired of holding the family together."

I can't fix Molly's family or get Leonard his job back, so I give her a hug and a prescription for anti-depressants.

Health Care: The Change We Need

Today's post is from Patricia Harman, author of The Blue Cotton Gown: A Midwife's Memoir. Harman got her start as a lay-midwife on the rural communes where she lived in the '60s and '70s, going on to become a nurse-midwife on the faculty of Ohio State University, Case Western Reserve University, and West Virginia University. She lives and works near Morgantown, West Virginia, and has three sons. In the interest of privacy, the names and some identifying details of the women she discusses in this post have been changed.

Willa Burr, a forty-eight-year-old West Virginian, was a housekeeper and a darn fine one. She made good money too; a little over $14.00 an hour on Mondays, Thursdays, and Fridays for two doctors' families and a single middle-aged teacher. The rest of the week, she stayed home with her three-year-old granddaughter.

Darrell, her husband, had retired early, when the shirt factory at the edge of town closed. He worked on an addition to their house on Taylor Mountain, a little at a time, when they could afford lumber. He had diabetes and took the medication he got at the free clinic. When the snow was too bad, he drove Willa down the steep mountain, in his four-wheel-drive truck, into the suburbs for her cleaning jobs.

Life was pretty good on their two acres, what with Willa's pay and Darrell's Social Security, until Willa's knees gave out. First Mrs. Haddock let her go. That's the urologist's wife. She said Willa was missing too much work, but there was only that once when Willa and Dave had to go to South Carolina for two weeks to help their son, and the other time when Willa had the flu.

The real reason Mrs. Haddock fired Willa was she couldn't get down on knees on the tile floors anymore, and the dusting was deteriorating too. Then Dr. Kepler said he didn't need her either. That left Miss Robinson, the second grade teacher, and when Willa noticed her hands were shaking and walking was difficult, she gave up cleaning altogether and just stayed home. Maybe she'd been working too hard, was what Darrell said.

After that things went downhill. Willa's daughter, Tina, a secretary in an accountant's office, took her mom down to the low-income clinic, staffed by students, residents, and faculty from a nearby medical school, but they couldn't find anything wrong. Then, even though the Burr's couldn't afford it, Willa and Darrell made an appointment at the Patterson Family Health Center to see a young Doc who wore a gold cross around his neck and a cashmere sweater. He wasn't much help.

The medical bill, from the clinic was $565, counting lab work. The doctor with the gold cross said he was pretty sure Willa had Parkinson's disease and wanted to order more tests, maybe a CAT scan of her brain, but Willa refused. She didn't have the money. And she couldn't pay for a trial of medication either.

World AIDS Day Link Roundup

Kai Wright at The Root: Can Obama help black America survive this plague?

Susan Blumenthal, MD, at Huffington Post: Aidsism in America

Jennifer Huget at Washington Post: How to Mark World AIDS Day? How About Getting Screened?

NPR: AIDS Epidemic Grows Among Children

Do You Know Your Genes?

Today's post is from Clare Dunsford, author of Spelling Love with an X: A Mother, A Son, and the Gene that Binds Them. Dunsford is an associate dean in the College of Arts and Sciences at Boston College and has been a contributing writer for Boston College Magazine. She was previously an adjunct lecturer in English at Boston College and Harvard University.

Maybe you have heard of the HGP, the Human Genome Project. But have you heard about the PGP-10? This daring group of ten genetic pioneers has agreed to post their personal genomes on the Web in an effort to create a database of information that may lead to faster cures for genetic diseases. Very few of us have anything but the vaguest and most anecdotal information about the genes we carry: "I've got Aunt Hilda's hips and Uncle Frank's short temper." Certainly my family and I were not aware of our own genetic inheritance before my son's diagnosis with fragile X syndrome in 1993; the FMR1 gene wasn't even discovered until two years before. Fragile X is the most common inherited cause of mental impairment and the most common known cause of autism.

When I sat in front of a genetic counselor a couple of years after the initial diagnosis, I saw my family arrayed before me like a poorly designed Tinkertoy—a bunch of squares and circles connected by lines. The genetic counselor informed me that every person carries six to eight genes that are problematic. I just happened to know the name of one of mine. FMR1 this little creature is called. When a section of nucleotides called CGG repeats too many times, a vital protein is not produced, leading to cognitive disability, emotional difficulties and attention deficit.

In the fifteen years since my family learned of fragile X, the full human genome has been sequenced, much more quickly than anyone predicted, and genetic tests have been developed for over 1500 conditions. Some day (if you don't already) you will know the name of one of your own genes, one of the half dozen that carry the potential to make you ill or change your personality or cause you to bear a child who will never be independent.