While Medicaid is the main government health insurance plan for the poor, the joint state-federal program has excluded Matthews and millions of other adults with no dependent children since the 1960s. Medicaid has been limited mainly to children in poor families, the elderly, pregnant women and the disabled. Some states have tried to fill the gap, but childless adults now comprise a majority of uninsured Americans.

The lowest-income members of the group would be among the big beneficiaries of the Democratic health insurance overhaul plans in Washington. Senate legislation and President Obama’s new health proposal would expand eligibility to all with incomes up to 133 percent of the federal poverty level, or $14,404 for a single person. The House bill would set the mark at 150 percent or $16,245 for single people. Over 10 years, Medicaid enrollment would grow by 15 million, including not only childless adults but others whose incomes don’t qualify now for the program. Whether the Democrats can push an ambitious plan through Congress is uncertain. If one doesn’t pass, the states are in no position to expand Medicaid coverage without federal help: the states face huge shortfalls from the recession. Covering childless adults would mark a radical shift in thinking about who deserves a helping hand, not to mention a departure from what Congress intended when it created Medicaid 45 years ago. The exclusion is rooted in the welfare system of 17th Century England, and an attitude that able-bodied men should not be on the public dole. Imported to America, the distinction was reflected in cash assistance laws enacted during the New Deal, which served as a blueprint for Medicaid years later. Pros And Cons Supporters of a Democratic overhaul say excluding childless adults is an anachronism at a time when they are just as apt to become ill or face crushing medical expenses as anyone else. Even for many working adults, they note, health insurance has become unaffordable in recent years. Critics say expanding Medicaid twists the program’s original intent, which was to aid the most vulnerable citizens. They also cite the budget-busting potential of expanded public health care. But there is ambivalence on both sides. Conservative critics have backed off some of the strident anti-welfare rhetoric that has colored such debates in the past. And some supporters of expanded public coverage for the poor question whether Medicaid is the right vehicle, because care can be uneven, and the program carries the moral stigma of welfare. “It is great that all these people will be able to get care. I don’t want to denigrate that. But it is perpetuating this two-track health care delivery system,” says Penn professor Michael Katz, author of “The Undeserving Poor: From the War on Poverty to the War on Welfare.” Many doctors already refuse to accept Medicaid patients because the government payments are so low. In a survey of major cities last year by health consultants Merritt Hawkins & Associates, Philadelphia ranked near the bottom in the percentage of cardiologists and OB/GYNs who accepted Medicaid. Administrative hassles may also limit care. A 2008 study in the journal Health Affairs found that Pennsylvania took the longest to pay doctors for Medicaid services – almost four months, on average, further discouraging participation. Supporters say just a fraction of the uninsured would have trouble getting adequate care while millions would benefit from the expansion. Moreover, they say, at a time when many uninsured visit expensive hospital emergency rooms as their primary source of care, expanding a program like Medicaid, with its emphasis on preventive care, is more efficient. Many Need Care What is clear is that an expanded Medicaid would cover a wide range of people, from uninsured young adults to empty nesters to divorced spouses and widows left without insurance. Many of these folks have un-met health needs. The number of people on Medicaid who have severe mental illness and substance abuse addictions is expected to more than double if the overhaul passes. The legislation would also bridge a gap for unemployed and uninsured Americans who are not old enough to qualify for Medicare, federal health insurance for the elderly. Montez Tucker, 50, wrestled with alcohol and drug problems. Now clean, his income qualifies him for Medicaid but he has no health insurance. The overhaul would reverse a practice that currently makes it more difficult for people with drug or alcohol addictions to get Medicaid coverage. (Michael Bryant/Philadelphia Inquirer) Matthews fits that profile. Growing up, she had insurance through her parents, and later through her husband, who worked in a family steel business. “I always had health insurance,” she says. After her husband died from leukemia in 1995, she worked as a marketing consultant, receptionist and administrative assistant. She last worked in 2006 as a front desk agent at a corporate conference center in Bryn Mawr. But she hasn’t had health insurance since 2002. Without an employer to help with the premiums, she says coverage is beyond her reach. She went back to school in 2007 to become a certified legal assistant, just in time for the recession to hit. Today, she trolls for jobs on her laptop, and tries to stay as healthy as possible, although she has not seen a doctor in years. There’s a bowl of apples on her dining room table, and a treadmill in the living room of the brick Colonial she bought with her husband in the 1980s. Matthews says she was surprised to learn that being unemployed with “no money in your checking account” counts for little in getting public health care. “It is pretty crazy,” she says of the current system. Young Also Struggle About half of uninsured childless adults are between the ages of 19 and 34, and would be discouraged from working if they got free health care, critics say. “Medicaid should be focusing on people that Medicaid is uniquely qualified to serve, which are people with complex medical needs, people with disabilities,” says Dennis Smith, head of Medicaid under President George W. Bush. But Heather Jenkins, 29, a personal trainer living near Baltimore, says she can’t get private insurance because of injuries she suffered in an auto accident a few years ago, leaving her with chronic jaw pain and hip problems. At the same time, her injuries are not considered extensive enough to get her free health care under federal disability laws. The Medicaid expansion could help her: she now earns less than $15,000, and might meet the income criteria in an overhaul bill. “I am hoping to still work and pay taxes. I cannot get Social Security (disability insurance) because I am not that disabled. But I am too disabled to get health insurance,” she says. Some candidates for the new Medicaid might not be considered so sympathetic. The overhaul would reverse a practice adopted as part of welfare reform in 1996 that made it more difficult for people with drug or alcohol addictions to get Medicaid coverage. For years, Montez Tucker, 50, wrestled with alcohol and drug problems. The Philadelphia resident says he got clean three years ago after checking into a Christian mission treatment center. But he has no health insurance. Today, he works about 20 hours a week, earning $10 an hour, as a package handler for an express mail company, low enough to qualify him for Medicaid under the proposed new rules. “I really want to make more than $15,000 a year,” says Tucker, a former National Guard paramedic, who is returning to school to become a certified nursing aide. “But (Medicaid) helps if you can’t” make more. He thinks expanding coverage for substance abusers would be money well spent. “People want help and have no way to get it,” he says.

By Rick Schmitt

KHN Staff Writer

Mar 08, 2010

The medical profession’s reaction has been quite different. Although major professional organizations have endorsed various reform measures, no promises have been made in terms of cutting any future medical costs. Indeed, in some cases, physician support has been made contingent on promises that physicians’ income would not be negatively affected by reform.

It is appropriate to question the ethics of organized medicine’s public stance. Physicians have, in effect, sworn an oath to place the interests of the patient ahead of their own interests — including their financial interests. None of the for-profit health care industries that have promised cost savings have taken such an oath. How can physicians, alone among the “special interests” affected by health care reform, justify demanding protection from revenue losses?

Physicians might insist that they should be immune from income loss if the causes of excessive health care costs are beyond their control. The American Medical Association (AMA), for example, addresses cost containment almost solely by calling for malpractice reform, suggesting that high costs are the fault of the legal and not the medical system.¹

Unfortunately, the myth that physicians are innocent bystanders merely watching health care costs zoom out of control cannot be sustained. What we now know about regional variation in costs within the United States suggests that nearly one third of health care costs could be saved without depriving any patient of beneficial care, if physicians in higher-cost regions ordered tests and treatments in a pattern similar to that followed by physicians in lower-cost regions.² We also have good reason to believe that physicians in lower-cost regions order and provide evidence-based tests and treatments just as often as their higher-cost colleagues do, but they tend to avoid providing care whose usefulness is not well supported by existing evidence.³ In short, U.S. physicians could do a great deal to control costs if they were willing to practice more in accordance with evidence-based guidelines and to study more seriously the data on regional practice variations.

Physicians should recognize that the high cost of future medical care is one of the main stumbling blocks to the passage of health care reform legislation that would extend insurance coverage to most Americans who now lack it. Physicians know from experience how people’s health is placed at risk when they lack insurance and access to basic, timely care. A profession that has sworn to put the patient’s interest first — to conduct itself as a profession and not merely as a business — cannot justifiably stand idly by and allow legislation that would extend basic access to care to go down to defeat while refusing to contemplate any meaningful measures it might take to reduce health care costs.

In my view, organized medicine must reverse its current approach to the political negotiations over health care reform. I would propose that each specialty society commit itself immediately to appointing a blue-ribbon study panel to report, as soon as possible, that specialty’s “Top Five” list. The panels should include members with special expertise in clinical epidemiology, biostatistics, health policy, and evidence-based appraisal. The Top Five list would consist of five diagnostic tests or treatments that are very commonly ordered by members of that specialty, that are among the most expensive services provided, and that have been shown by the currently available evidence not to provide any meaningful benefit to at least some major categories of patients for whom they are commonly ordered. In short, the Top Five list would be a prescription for how, within that specialty, the most money could be saved most quickly without depriving any patient of meaningful medical benefit. Examples of items that could easily end up on such lists include arthroscopic surgery for knee osteoarthritis and many common uses of computed tomographic scans, which not only add to costs but also expose patients to the risks of radiation.^4,5

Having once agreed on the Top Five list, each specialty society should come up with an implementation plan for educating its members as quickly as possible to discourage the use of the listed tests or treatments for specified categories of patients. Umbrella organizations such as the AMA might push hard on specialty societies and pressure the laggards to step up.

Some societies will be tempted to bluff their way through the Top Five exercise, deliberately omitting cost-cutting measures that would particularly affect members’ revenue streams. Societies could display their professional seriousness by submitting their lists for review and comment to several societies in other specialties.

Some would object that considerably more comparative-effectiveness research is needed before such lists can be compiled and implementation strategies developed. And indeed, today we have no idea how to implement a practical plan that would recapture the roughly 30% of health care expenditures estimated to be wasted on nonbeneficial measures.² I would guess, however, that if we were trying to save that entire sum of money, we would be proposing “Top Twenty” or “Top Fifty” lists for many specialties, not just the Top Five. I suggest that no matter how desirable more research is, we know enough today to make at least a down payment on medicine’s cost-cutting effort. As good citizens and patients’ advocates, we should begin where we can.

A Top Five list also has the advantage that if we restrict ourselves to the most egregious causes of waste, we can demonstrate to a skeptical public that we are genuinely protecting patients’ interests and not simply “rationing” health care, regardless of the benefit, for cost-cutting purposes. As we inched closer to the entire 30% savings, we would inevitably face increasingly controversial treatment cutbacks — cases in which a substantial minority of experts believed a treatment provided real benefits for many populations. Such controversies should be postponed until the evidence is clearer and a more acceptable national structure for adjudicating such debates is in place.

Another objection might come from primary care specialties. Given the serious shortage of primary care physicians in the United States, due partly to the income gap between that field and others, shouldn’t societies of primary care physicians get a pass on the Top Five list? Although I’m sensitive to the urgent need for increasing the primary care workforce, I would argue that all physicians have ethical responsibilities. Showing that we are ready to stand alongside all other specialties in examining our own practices in light of the best scientific evidence is an important aspect of professional integrity and should not be avoided by any specialty.

Finally, the best rebuttal to the antireform argument that all efforts to control medical costs amount to the “government getting between you and your doctor” is to have physicians, not “government,” take the lead in identifying the waste to be eliminated. Mark Twain said, “Always do right. This will gratify some people and astonish the rest.” Today, meaningful health care reform seems to be in danger of taking a back seat to special-interest pleading and partisan squabbling. If physicians seized the moral high ground, we just might astonish enough other people to change the entire reform debate for the better.

Keith Olbermann opened his emotional Special Comment on health care Wednesday with the story of his father’s six-month-long hospitalization suffering through a colon removal, pneumonia, kidney failure, liver failure, and many infections.  

After a particularly difficult week, Olbermann said he went into his father’s hospital room to find him “thrashing his head back and forth” and mouthing the word “Help.”  “It was just too much for my father,” Olbermann said. “‘Stop this,’ he mouths. ‘Stop, stop, stop.’”

Olbermann said he resorted to gallows humor, asking his father, “What, you want me to smother you with a pillow?” And his father responded, mouthing, “Yes, kill me.”

“And as I left the hospital that night, the full impact of the last six months washed over me,” Olbermann said. “That conversation, that one, was what these ghouls who are walking into Blair House tomorrow morning called death panels. Your right to have that conversation with a doctor. Not the government, but a doctor. And your right to have insurance pay for his expertise on what your options are when dad says ‘Kill me’ or what your options are when dad is in a coma and can’t tell you a damn thing.”

Olbermann then laid into those who spread fear about death panels.

“That, right now, is the legacy of the protests of these subhumans who get paid by the insurance companies, who say these things for their own political gain, or like that one fiend, for money,” Olbermann said. “Betsy McCaughey told people tht this conversation about life and death and relief and release…she told people that’s a death panel and she did that for money! It’s a life panel. A life panel. It can save the pain of the patient and the family. It’s the difference between you guessing what happens next and you being informed about what probably will. And that’s the difference between you sleeping at night or second-guessing and third-guessing and thirtieth-guessing yourself.”

“It’s a life panel, and damn those who call it otherwise to hell!” he said.

Olbermann closed the comment with news that his father has not awoken since Friday, and that it’s now possible he never recovers.

“So considering that if he does not recover you will not see me here for a while, I have some requests,” he said. “Please, have this conversation with your loved ones. Don’t wait. Do it now. It’s tough. It acknowledges death, and it also narrows the gray area you and they will face from infinity to a foot wide. It is my greatest comfort right now and I want it to be yours. And to the politicians who go into Blair House tomorrow, for that summit, I have some requests as well. Leave your egos at the door. I want, I demand that you give everybody in this country a chance at the care my father has gotten. And I demand that you enact this most generous and kind aspect of the reform proposed, the right to bill the damned insurance company for the conversation about what to do when the time comes. The life panel.”

It is being hailed as a breakthrough for young women whose hope of one day becoming mothers could be wrecked by cancer therapy in their reproductive years.

Stinne Holm Bergholdt, from Odense, Denmark, was diagnosed with a cancer type known as Ewing’s sarcoma in 2004, when she was 27.  Before she began chemotherapy, part of her right ovary was removed and frozen. Her left ovary had already been removed some years earlier after doctors found a cyst that turned out to be benign.  The cancer treatment was a success but, as usually happens in such therapy, the drugs brought the onset of menopause.

In December 2005, six thin strips of ovarian tissue were transplanted back on to what remained of her right ovary, and began to function normally, according to the case reported by the European Society of Human Reproduction and Embryology (ESHRE) in its journal Human Reproduction.

After a brief corse of hormones to stimulate egg production, Bergholdt became pregnant again and gave birth to her first daughter, Aviaja, in February 2007.
In 2008, she returned to her fertility clinic, seeking in-vitro fertility (IVF) treatment in the hope of conceiving again.

But a pregnancy test showed that she was already pregnant through natural means, and in September 2008, she gave birth to another girl, Lucca.

Seven other children have been born around the world using the so-called cryopreservation technique, but this is the first time it has helped a woman to have two babies.

“These results support cryopreservation of ovarian tissue as a valid method of fertility preservation and should encourage the development of this technique as a clinical procedure for girls and young women facing treatment that could damage their ovaries,” said her physician, Claus Yding Andersen, a professor at the University Hospital of Copenhagen.

Bergholdt is even having to use “pregnancy-preventing measures” to avoid a pregnancy right now, said Andersen.

In a press release, Bergholdt described the experience as “a miracle.”

“When I found out I was pregnant for the first time I was of course very happy and excited — but also very afraid and sceptical since I found it very hard to believe that my body was really working again,” she said.

“The second time it was quite a surprise to find out I was pregnant since we hadn’t been working on it — we thought we needed assistance like the first time… It was a very nice surprise to find out that my body was now functioning normally and that we were having a baby without having to go through the fertility treatment.”

She and her husband have not decided yet whether they wanted more children, she added.

“The girls are still so small and need a lot of attention, but maybe in a couple of years we might think about it again.”

The Dubai Gynaecology and Fertility Centre that stores an estimated 5,000 eggs fertilised through In-Vitro Fertilisation (IVF) will start the disposal procedure next week, according to a notice issued by the Dubai Health Authority (DHA). Another 5,000 frozen embryos are believed to be stored at the Al Tawam Hospital in Al Ain.

The law that was passed by the Federal National Council two years ago rejected the medical procedure on religious grounds, fearing mixing in the lineage.  It was also unclear how the fertilised eggs would be disposed of since DHA did not provide any details on the issue on Sunday. “Recognised scientific methods will be used to complete the procedure,” read the notice.

This move is expected to affect several families, who have sanctioned the storing of the embryos. In normal circumstances, the centre asks for the couple’s consent before disposing of any stored egg.  “It is a huge and drawn out process and this will definitely affect many women psychologically,” opined a senior gynaecologist, who did wished not to be named. “The fertilised eggs can be valuable any time since surrogacy and adoption are becoming a common practice the world over. Women need to have the option of having to choose fertility methods,” added the gynaecologist.  The Dubai centre has been freezing embryos for over nine years and charges an annual maintenance fee.

Private clinics in the emirate are banned from carrying out the IVF procedure and freezing embryos, leaving the Dubai centre as the only option. Many a times, patients have to wait for years to avail themselves of the facility. Other emirates, however, continue to offer IVF treatments but not storage of embryos.

Since its inception in 1991, the centre has served thousands of couples with fertility problems. In 2008, the first ‘designer baby’ in the country was born to a UAE couple with fertility issues after they received treatment at the centre. However, the gender selection process was done only on two conditions: family balancing and genetic complications.

Frozen embryos are artificially implanted in women who cannot conceive naturally.

The extra embryos (those left over after the transfer of fresh embryos following IVF) can be frozen and have been known to be viable for up to 10 years. Embryos are stored in industry-standard cryo-storage tanks that are monitored regularly for liquid nitrogen level. 

 asmaalizain@khaleejtimes.com Original Article here.

Dr. Lana Skirboll, director of the Office of Science Policy of the National Institutes of Health, called the change technical and said it would be posted in the federal register for comment. Human embryonic stem cells are the body’s master cells, taken from very early stage embryos when they are just a ball of cells. The current definition describes them as cells taken from the inner layer of a blastocyst — a days-old hollow ball of cells. Skirboll said the new definition will include earlier stage embryos. “We are making what I think is a relatively small technical change to the definition of human embryonic stem cells,” Skirboll said in a telephone interview. “This changes none of the ethical requirements in the guidelines.” U.S. President Barack Obama lifted some restrictions on the federal funding of human embryonic stem cell research soon after he took office last year but the NIH imposed strict ethical requirements and a review process for funding. Dr. Robert Lanza of Massachusetts-based Advanced Cell Technology, one of the companies seeking federal funding for its research, said the decision was important. His company is working with cells taken from embryos when they only have eight cells, with the aim of making it possible to implant the remaining seven-celled embryo into a woman to develop into a fetus. “It would have been a disaster to exclude these valuable human embryonic stem cell lines from consideration for federal funding, especially since the leftover embryos used to generate them meet all the NIH requirements,” Lanza said by e-mail. “In fact, it could be strongly argued that these human embryonic stem cell lines are more ethical since they can be derived without embryo destruction.” Opponents of human embryonic stem cell research believe it is wrong to destroy a human embryo for any reason and some oppose any research at all involving human embryos.

Ray Gosling was arrested on Tuesday after he told a BBC documentary that he smothered the man. The admission and investigation has added to an already heated public debate in Britain on the issue of assisted suicide or euthanasia.

Dr Evan Harris is a UK parliamentarian and a member of the British Medical Association’s Medical Ethics Committee. Dr Peter Saunders is General Secretary of pressure group ‘Care Not Killing’. The BBC’s Roger Hearing brought them together and began by asking Dr Saunders why the issue was so prominent now.

Listen to BBC broadcast here which explains the case and the differences between murder, euthanasia, and assisted suicide.

[Newsweek] The unsettling story of Henrietta Lacks begins with an everyday occurrence: a trip to the doctor’s office. The 30-year-old African-American’s 1951 diagnosis of cervical cancer would change her life, and the damaged cells taken from her body without permission would alter the course of medical history. At a time when health-care reform is a key concern for the White House and millions of Americans, Lacks’s story is a potent reminder of the injustices that were perpetrated by the health-care industry on the poor and uneducated not long ago. 

Raised by her grandfather on a tobacco farm in Virginia, Henrietta Lacks was the granddaughter of slaves. She gave birth to her first child at 14 and later married the father of the baby, who happened to be her first cousin—not uncommon at the time. Shortly after Henrietta turned 30, she felt a knot in her lower stomach that she knew meant something was wrong. But with a husband and a house full of kids to take care of, Lacks could ill afford to worry for long; her family also had little money for a doctor’s visit, and at the time, many hospitals offered African-American patients substandard treatment.

Months later, after the birth of her fifth child, the knot was still there, so Lacks finally asked her husband to drive her to Johns Hopkins hospital, the only medical facility nearby that saw “colored people” for free. There, the doctors diagnosed Lacks with stage I epidermoid carcinoma of the cervix, which would require her to have radiation treatments a few times a month. During her first two-night stay in the hospital, doctors sliced several pieces of tissue from her cancerous tumor and placed them in a dish in the hopes of growing and studying them. Neither Lacks nor her family gave permission for her cells to be taken.

George Gey, then the head of tissue-culture research at Johns Hopkins, had been trying to grow malignant cells outside the body for nearly three decades, hoping to determine what caused cancer and ultimately how to cure it. Most cells died quickly in the lab, and the few that did survive failed to grow. But Gey was determined to grow the first immortal human cells—a continuously dividing line of cells that all descended from one original sample, cells that would replenish themselves and never die. Lacks’s damaged cells turned out to be the answer to his prayers. Her cancer cells grew unlike any the doctor had seen before, doubling in number every 24 hours. Excited by the findings, Gey began to alert his peers that he was sure he’d found the first immortal cells. And then he began sending Lacks’s cell culture, named “HeLa” to avoid using Lacks’s name, to any scientist who was interested in using it for cancer research. He sent the cells to Texas, India, New York, Amsterdam—anywhere researchers might find them useful.

But neither Gey’s excitement nor research helped Henrietta Lacks. Six months after being diagnosed with cancer, she was dead. She was taken back to her hometown of Clover, Va., and buried in a plain wooden box in an unmarked grave. It would be years before her family would realize that her living cells, which survive to this day, had birthed a multimillion-dollar industry selling human biological materials and had contributed to the study of cancer, had helped in developing the polio vaccine, and had allowed scientists to determine the effects of the atom bomb. They also led to important advances in in vitro fertilization, cloning, and gene mapping. HeLa has been bought and sold by millions of researchers in the decades since, likely earning hundreds of millions of dollars for the medical industry. Johns Hopkins maintains it never benefited financially from the sale of the cells.

Neither did the Lacks family. Most of Henrietta’s children died with only limited knowledge of what had actually been done with their mother’s cells, and today few of her grandchildren or other relatives can even afford to have insurance of their own, according to a new book by Rebecca Skloot, The Immortal Life of Henrietta Lacks.

Some 60 years after doctors committed what today would be an unconscionable violation of medical ethics, there’s still only limited information on how often the practice of taking samples without consent was done to patients of poor backgrounds and limited education. But Henrietta Lacks certainly wasn’t the only African-American mistreated by the American medical establishment. Books such as Harriet Washington’s Medical Apartheid  have documented many cases of blatant misuse of medical practices on unknowing and unsuspecting black patients in the name of furthering science and discovering cures.

It might seem as though this kind of disturbing and unethical practice would be limited to another, less-enlightened time, such as the ’30s and ’40s, which is when the granddaddy of all medical injustices, the infamous Tuskegee syphilis study, began. But some evidence uncovered by Washington’s book suggests that black orphan children were used as test subjects as recently as the ’80s in New York: tests to determine the effectiveness of some AIDS treatments were given to the children without adult consent.

In a just world, Henrietta Lacks’s descendants would have health care given to them free for the rest of their lives, like the victims of the Tuskegee study. But instead her case stands as yet another example of the medical establishment’s mistreatment of poor and minority Americans, the aftereffects of which linger to this day.

Find this article at http://www.newsweek.com/id/233671

So how might the new Bioethics Commission operate? Fortunately, we have some idea because its new chair, Amy Gutmann, outlined her views on how bioethics commissions should be run in an article, “Deliberating About Bioethics” in the Hastings Center Report back in 1997. Most of the 13 member panel hasn’t been appointed yet, but Gutmann is well-known for her scholarly work on deliberative democracy, which she defines “as a form of government in which free and equal citizens (and their representatives), justify decisions in process in which they give one another reasons that are mutually acceptable and generally accessible, with the aim of reaching conclusions that are binding in the present on all citizens but open to challenge in the future.”  

In her article (co-authored with political philosopher Dennis Thompson), Gutmann distinguishes deliberative democracy from proceduralism and constitutionalism. In proceduralism, once basic rules of the game have been hammered out, moral disagreements are resolved through political bargaining or by moving them out of politics into the private sphere. Constitutionalism tries to avoid moral disagreement by creating a sphere of protected rights that are shielded from ordinary politics.

In Gutmann’s conception, deliberative democracy is an ongoing, transparent, society-wide discussion of fundamental values. Deliberative democracy is supposed to serve four important social purposes by addressing four ineradicable sources of moral disagreement. She identifies the four sources of moral disagreement as arising from (1) the scarcity of resources; (2) limited generosity; (3) incompatible moral values; and (4) the incomplete understanding that characterizes almost all moral conflicts. The four social purposes that deliberative democracy is supposed to address are (1) the promotion of the legitimacy of collective decisions; (2) the encouragement of public-spirited perspectives on public issues; (3) the promotion of mutually respectful decisionmaking: and (4) the correction of inevitable collective action mistakes.

Gutmann offers some concrete examples of how she thinks deliberative democracy might work. Let’s take scarcity. She notes that far more people need organs than there are organs available for transplant. How do we decide who gets them? She suggests that “deliberation can help those who do not get what they want or even what they need come to accept the legitimacy of a collective decision.” As it happens in 1984, the U.S. Congress passed the National Organ Transplant Act which made organ sales illegal. Since then donated organs have been allocated by the United Network of Organ Sharing based on various medical criteria depending on the specific organ. Although some voices (including mine) have been arguing for compensating donors as a way to increase supplies, it is true that there has not been much public pressure to change the current system. However, one hopes that the deliberative process will someday correct this particular collective action mistake. On the other hand, we can expect a lot more bioethical deliberation if the U.S. adopts a more centralized and increasingly government-controlled health care system. In another article Gutmann favorably cites the United Kingdom’s National Institute for Health and Clinical Excellence (NICE) as an example of how democratic deliberation works in making decisions about what medicines and treatments will be made available to patients in that country’s National Health Service.

The next issue is limited generosity. Gutmann acknowledges, “Deliberation will not turn self-centered individualists suddenly into public-spirited citizens.” She argues that members of bioethics commissions should not be chosen just to represent specific interest groups; that would simply result in old-fashioned interest group bargaining. Gutmann asserts that the number and diversity of voices on a bioethics commission is not necessarily the most important factor in making deliberation work. Instead bioethics commissioners “must come to the forum open to changing their own minds as well as to changing the minds of their opponents.” Bioethics commissioners will be more amenable to changing their minds on such limited questions as when is it appropriate to include minors in medical research rather than issues like abortion and assisted suicide.

Which brings us to Gutmann’s third source of moral disagreement—incompatible moral values. Here she recommends that bioethics commissions isolate irresolvable conflicts and focus on areas where agreement might be possible, e.g., minors in medical research. As an example of how deliberation can “economize” on moral disagreements, she cites the fetal tissue research guidelines issued in 1975 by the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The commission held extensive public hearings and consulted legal experts, scientists, ethicists, and philosophers before promulgating its regulations allowing fetal tissue research. Those regulations included the requirement that researchers seeking to harvest tissue not have any part in the timing, method, or procedures used to terminate a pregnancy; no inducements to terminate a pregnancy could be made; both parents must consent; and artificial life support for nonviable fetuses was prohibited. But this deliberative outcome did not hold. In 1988, arguing that the fetal tissue research could encourage abortion, the Reagan administration imposed and later the Bush administration maintained a federal funding moratorium on fetal tissue transplant research. The moratorium was lifted by President Bill Clinton in 1993.

The history of the bioethical deliberation over fetal tissue research might be seen as an example of Gutmann’s fourth purpose of deliberation, the correction of mistakes. In the fetal tissue case, later experts did argue that political appointees under Reagan and Bush were mistaken in their belief that federal funding of fetal tissue research would lead to more abortions. On the other hand, given that a National Institutes of Health advisory panel in 1988 recommended after considerable deliberation that the moratorium be lifted, one suspects that the encourages-more-abortions argument for banning federal funding was a stand-in for a deeper philosophical repugnance toward all abortion. In any case, the fetal tissue case and President Obama’s decision last year to overturn President George W. Bush’s limits on federal funding of human embryonic stem cell research shows that bioethics decisions in the U.S. are already provisional and open to challenge.

I generally agree with the proceduralists and constitutionalists. In order to keep the social peace and allow various visions of the human to flourish along side of one another, certain big questions about birth, death, and the meaning of life must be isolated from politics, making them private concerns to be protected from majoritarian tyranny. But for her part, Gutmann concludes hopefully, “By making democracy more deliberative, we stand a better chance of resolving some of our moral disagreements, and living with those that will inevitably persist, on terms that all can accept.” Given the current stark polarization that characterizes our national political institutions (if not public opinion), Gutmann, as head of the new Presidential Commission for the Study of Bioethical Issues, has her work cut out. Good luck to her.

Ronald Bailey is Reason’s science correspondent. His book Liberation Biology: The Scientific and Moral Case for the Biotech Revolution is available from Prometheus Books.

The author, Aleksandr Nikonov, used the word “debil” — a deeply offensive term in Russian — to characterize such children. He argued that parents should have the right to euthanize newborns diagnosed with mental retardation and other developmental disabilities.

The article, which ran under the headline “Finish Them Off, So They Don’t Suffer,” went on to describe what Nikonov termed “postnatal abortion” as an act of mercy.

Mitina and her friend, Svetlana Shtarkova — both mothers of children with developmental disabilities — decided to take action. They filed a complaint with the Russian Union of Journalists against Nikonov, a correspondent for the popular tabloid “Speed-Info.”

The two women say their aim is not to punish Nikonov but to raise the alarm about Russia’s culture of intolerance toward disabled people. Shtarkova made an emotional appeal at a hearing last week at the journalists’ union.

“The opinion expressed by the author is not unique; statistics show that one-fourth of Russians share similar views,” Shtarkova told the February 2 hearing. “Complete strangers come up to me in the street and tell me that I’m depraved and deserve my fate. Doctors and social workers refuse to do their jobs, just because my child is severely disabled.”

The lawyer representing the two mothers, Pyotr Kucherenko, told the board that Nikonov’s proposal to put “flawed” babies to death only fueled discrimination and was dangerously reminiscent of the theories of racial superiority upheld by Nazi Germany.

Nikonov, however, was unrepentant.

“Let me introduce myself: I am Adolf Hitler. This is the way people want to portray me,” Nikonov says. “But the real bastards are those who tell me, ‘Yes, it is good and fair that people are in pain. We’ll look on and say people can suffer, as long as our scholarly conception of humaneness is not affected.’ To hell with you. People shouldn’t suffer. This is my opinion, and you won’t shut me up.”

Mobilized Mothers

Nikonov’s arguments failed to convince the Union of Journalists, which ruled that his article bordered on extremism and asked “Speed-Info” to publish a rebuttal by Mitina and Shtarkova.

Although the union’s complaints board has no legal authority, plaintiffs and defendants at the hearing formally pledge to fulfill the board’s recommendations. The ruling is a symbolic victory for the two mothers, who have relentlessly defended their children’s right to life.

Shtarkova keeps several blogs — one of them on RFE/RL’s Russian Service website and the other on livejournal  — devoted to her 3-year-old son, Ivan, who was born with severe brain damage and other birth defects as a result of a rare genetic disorder that went undetected during Shtarkova’s pregnancy.

Mitina also has a blog and chairs an organization to improve understanding of Hunter syndrome — a genetic disease that prevents the body from eliminating toxins, leading to severe physical and mental ailments.

Her son Pavel, now 10 years old, was diagnosed with Hunter syndrome when he was still an infant. The disease causes extreme pain in its sufferers, and Mitina says Pavel’s condition steadily grew worse, with little help from either the state or the medical community.

“He had this terrible word: ‘melp.’ It came from ‘Mommy’ and ‘help’ — that’s what he screamed when he was in a lot of pain,” Mitina says. “When we called ambulances, the doctors would say there was nothing they could do. The physicians who treated us for years said our child was dying as a result of the syndrome. It was awful.”

In 2006, news that U.S. scientists had come up with medication to help treat the painful effects of the disease gave Mitina new hope.

The first obstacle was cost: almost $25,000 per week. The second was the indifference she encountered at the Russian Health Ministry, which flatly turned down her request to import the drug.

“They told me: Find 20 children, have five articles in the press and three television reports, and then we’ll talk about it,” she recounts.

Mitina launched a campaign to find other Russian families raising children with Hunter syndrome. But health officials, she says, kept increasing the minimum number of sufferers needed to register the drug in Russia.

Only after she had rallied 215 families did the ministry finally agree, in 2008, to make the medication available to Russian patients.

Moral Crisis?

Thanks to her efforts, Pavel and dozens of other Hunter syndrome patients are receiving treatment, paid for by regional authorities. Although the long-term prognosis for Hunter patients remains grim — many patients die before the age of 20 — Mitina says Pavel’s quality of life has improved dramatically and he no longer suffers from constant pain. Mitina’s organization is now working to persuade all local governments across the country to buy the medication.

Her battle underscores Russia’s reluctance to care for its citizens with disabilities, widely regarded as burdens for society. The issue is gaining traction as Russia faces a severe population crisis brought on by a low birthrate and poor pediatric health.

Over the next two decades, Russia’s population is expected to shrink by 17 million people. Faced with such statistics, advocates of people with disabilities say the country cannot afford to let prejudice stand in the way of caring for the country’s estimated 15 million registered “invalids” — adults and children suffering from a range of physical and mental ailments.

So far, however, the state has yet to weigh in on the debate over Nikonov’s controversial article.

Lawyer Kucherenko says the official silence on a highly public proposal to kill babies with developmental disabilities shows that Russia is in the throes of a deep moral crisis.

“This article demonstrates the moral crisis that Russia has witnessed in recent years,” Kucherenko says. “Our law-enforcement agencies are actively combating extremism, but why isn’t the Prosecutor-General’s Office reacting [to Nikonov's article]? We are dealing with a bona fide extremist case discriminating against a social group.”

Divisive Debate

Ordinary citizens, by contrast, have reacted strongly. A video report on the case unleashed a heated debate on the website of RFE/RL’s Russian Service, a sign of how divided Russians still are on the issue of physical and mental disabilities.

“Is it really more humane to let a child suffer all his life? What happens when the parents die and the child is helpless?” asked one reader.

“People, especially Nikonov, should keep in mind that a child is not anyone’s property, he is a full-fledged person. Nobody has the right to decide whether he should live or die,” read another post.

Despite the grief caused to people with disabilities and their families, Nikonov’s article has already had the unintended positive effect of prompting a rare discussion on the plight of one of Russia’s most vulnerable populations.

Svetlana Sorokina, a television reporter and member of the Union of Journalists’ complaints board, says Nikonov “voiced the opinion of many Russians” on the topic and sparked debate.

“In a sense, what he did was useful, because these issues exist and they must be discussed,” Sorokina says. “We must know our opinions, why we think that way, and what the consequences are.”