Yet people can, and often do, behave in very different ways.

A news search for the words “hero saves” will routinely turn up stories of bystanders braving oncoming trains, swift currents and raging fires to save strangers from harm. Acts of extreme kindness, responsibility and compassion are, like their opposites, nearly universal.

Why are some people prepared to risk their lives to help a stranger when others won’t even stop to dial an emergency number?

Scientists have been exploring questions like this for decades. In the 1960s and early ’70s, famous experiments by Stanley Milgram and Philip Zimbardo suggested that most of us would, under specific circumstances, voluntarily do great harm to innocent people. During the same period, John Darley and C. Daniel Batson showed that even some seminary students on their way to give a lecture about the parable of the Good Samaritan would, if told that they were running late, walk past a stranger lying moaning beside the path. More recent research has told us a lot about what happens in the brain when people make moral decisions. But are we getting any closer to understanding what drives our moral behavior?

Here’s what much of the discussion of all these experiments missed: Some people did the right thing. A recent experiment (about which we have some ethical reservations) at the University of Chicago seems to shed new light on why.

Researchers there took two rats who shared a cage and trapped one of them in a tube that could be opened only from the outside. The free rat usually tried to open the door, eventually succeeding. Even when the free rats could eat up all of a quantity of chocolate before freeing the trapped rat, they mostly preferred to free their cage-mate. The experimenters interpret their findings as demonstrating empathy in rats. But if that is the case, they have also demonstrated that individual rats vary, for only 23 of 30 rats freed their trapped companions.

The causes of the difference in their behavior must lie in the rats themselves. It seems plausible that humans, like rats, are spread along a continuum of readiness to help others. There has been considerable research on abnormal people, like psychopaths, but we need to know more about relatively stable differences (perhaps rooted in our genes) in the great majority of people as well.

Undoubtedly, situational factors can make a huge difference, and perhaps moral beliefs do as well, but if humans are just different in their predispositions to act morally, we also need to know more about these differences. Only then will we gain a proper understanding of our moral behavior, including why it varies so much from person to person and whether there is anything we can do about it.

If continuing brain research does in fact show biochemical differences between the brains of those who help others and the brains of those who do not, could this lead to a “morality pill” — a drug that makes us more likely to help? Given the many other studies linking biochemical conditions to mood and behavior, and the proliferation of drugs to modify them that have followed, the idea is not far-fetched. If so, would people choose to take it? Could criminals be given the option, as an alternative to prison, of a drug-releasing implant that would make them less likely to harm others? Might governments begin screening people to discover those most likely to commit crimes? Those who are at much greater risk of committing a crime might be offered the morality pill; if they refused, they might be required to wear a tracking device that would show where they had been at any given time, so that they would know that if they did commit a crime, they would be detected.

Fifty years ago, Anthony Burgess wrote “A Clockwork Orange,” a futuristic novel about a vicious gang leader who undergoes a procedure that makes him incapable of violence. Stanley Kubrick’s 1971 movie version sparked a discussion in which many argued that we could never be justified in depriving someone of his free will, no matter how gruesome the violence that would thereby be prevented. No doubt any proposal to develop a morality pill would encounter the same objection.

But if our brain’s chemistry does affect our moral behavior, the question of whether that balance is set in a natural way or by medical intervention will make no difference in how freely we act. If there are already biochemical differences between us that can be used to predict how ethically we will act, then either such differences are compatible with free will, or they are evidence that at least as far as some of our ethical actions are concerned, none of us have ever had free will anyway. In any case, whether or not we have free will, we may soon face new choices about the ways in which we are willing to influence behavior for the better.

Peter Singer, a professor of bioethics at Princeton University and a laureate professor at the University of Melbourne, is the author, most recently, of “The Life You Can Save.” Agata Sagan is a researcher.

In response to these charges, physicians, scientists, and government public health officials are routinely on the defensive, refuting allegations of unconfirmed risks, justifying the value of recommended vaccines, and striving to preserve public trust in vaccination overall. While national data suggest that a strong foundation of support for vaccination remains, regional clusters of unvaccinated children and increases in nonmedical exemptions from state school-entry vaccination requirements are causes for alarm among advocates of vaccines. Even more worrisome is research suggesting that the safety of vaccines is a growing concern among many parents [1].

The contours of the current debate regarding vaccination may be notable for their novelty—new vaccines, new recommendations, new research evidence, and new trends in diagnoses, to name a few examples. Just as striking, however, are the echoes in contemporary vaccine debates of the history of such movements. At the heart of these conflicts are the complex, long-contested relationships among citizens, science, and the state and their implications for public health policy and practice. The historical antecedents of contemporary vaccine hesitancy and refusal reveal that the present state of affairs is not an unprecedented crisis but an opportunity for renewed education, dialogue, and consensus-building regarding the value of vaccines.

Patterns in the History of Vaccine Opposition

Two primary themes can be seen throughout vaccine opposition movements of the past and present. The first is the perception among critics that vaccines, individually and collectively, cause more harm than the diseases that they are intended to prevent. Even before the introduction of Edward Jenner’s smallpox vaccine, Cotton Mather and other advocates of variolation in eighteenth-century New England were forced to defend that immunization practice against such charges. As smallpox vaccination programs eventually contributed to a massive decline in the incidence of the disease by the early twentieth century, questions about the necessity of continuing to vaccinate grew in frequency and intensity.

This pattern has continued throughout the life cycles of more recent vaccines. Most have been met initially with great enthusiasm, in part because the serious, sometimes fatal consequences of the diseases they prevent had been familiar to the public. As a result of successful vaccination programs, vaccine-preventable diseases and their effects gradually become far less visible. In time, patients, parents, and even many health care professionals have little firsthand familiarity with the diseases that vaccines prevent. The benefits of vaccines are then difficult to discern, while the risks—those known to exist and others that are alleged—become comparatively more visible. Proponents lament that “vaccines are victims of their own success,” and opposition to vaccination has been particularly active during these ebbs in the prevalence of vaccine-preventable diseases.

A second theme in this history is the close association between the promotion of vaccines and mandatory vaccination policies intended to ensure compliance. The earliest laws requiring vaccination were introduced in several European cities and Boston within 25 years of the arrival of the smallpox vaccine. By 1827, Boston was the first U.S. city to link compulsory smallpox vaccination with school attendance, a practice that spread throughout the country by the end of the nineteenth century. Enforcement varied widely, particularly between outbreaks, and it declined altogether as smallpox grew exceedingly rare in the United States by the mid-twentieth century. The introduction of several new vaccines beginning in the 1950s, coupled with severe outbreaks of measles among schoolchildren, led to a renewed emphasis on school vaccination requirements in the 1960s and 1970s. These state requirements increasingly included most, if not all, vaccines routinely recommended for school-age children, establishing the model that persists today [2].

Compulsory vaccination has been strongly contested since its earliest appearances. In England, enforcement of a nineteenth-century smallpox requirement disproportionately targeted the working-class and poor with fines and jail terms for noncompliance, provoking an organized opposition movement [3]. Its efforts led to reforms allowing conscientious objections, the forerunner of contemporary exemptions from state vaccination requirements. In the United States, the Anti-Vaccination Society of America was established in 1879, and similar groups in cities brought together like-minded members of diverse religious, ethnic, and socioeconomic groups [4, 5]. They were often joined by medical practitioners whose views were outside the mainstream of their professions.

While the 1905 decision of the Supreme Court in Jacobson v. Massachusetts upheld the authority of governments to mandate vaccination (and a 1922 case—Zucht v. King—expressly permitted vaccination linked to school attendance), compulsory vaccination remained a source of considerable tension between health authorities and the public. A 1906 news item from York, Pennsylvania, headlined “Vaccination Stirs Revolt,” reported, “Threats to burn schoolhouses, whip teachers, and punish school directors have been the outcome of the enforcing of the compulsory vaccination law” [6]. In one affected school, only 94 of 370 students were in compliance with the requirement. Elsewhere during this period, scuffles with the police over compulsory vaccination were common, providing important context when we speak of contemporary “resistance” to vaccination [7].

By the early 1970s, most state vaccination requirements included newer vaccines such as measles and polio. A 1969 review of mandatory vaccination identified three principal objections voiced by opponents of these policies: government intrusion on religious beliefs, general distrust of medical science, and infringement of personal liberty [8]. These themes capture quite well the major objections of critics to that point, and they remain remarkably apt synopses of critiques of U.S. vaccine policy in 2012.

Contemporary Opposition to Vaccination Policy

Despite the introduction of many new vaccines and concurrent advances in vaccine science and practice, the core arguments of critics of vaccination continue to parallel those expressed for nearly 200 years. They question the science of vaccines—namely, that the risks are greater or the benefits less than the mainstream public health community believes—or assert that the state is inappropriately interfering with individual or parental autonomy by requiring vaccination for school-age children. What has changed are the ways in which parents, scientists, physicians, and others skeptical or critical of vaccines communicate and collaborate.

In contrast to the early history of vaccination, when local, grassroots opposition movements were most prevalent, today’s critics of vaccines are part of national and international networks that have capitalized on the explosive growth of information technologies in the past quarter-century. Many observers of this history point to a 1982 television documentary, DPT: Vaccine Roulette, as a turning point in the modern history of vaccine safety controversies [9]. The program featured emotional profiles of children believed by their parents to have been harmed by the diphtheria-pertussis-tetanus combination vaccine. In the years that followed, parents with similar stories involving a variety of vaccines and their alleged risks would become a mainstay of popular media coverage of vaccine debates.

Throughout the more recent controversy regarding vaccines and autism, some of these parents or grandparents have been celebrities or public officials, providing a still larger platform for such accounts, absent confirmation that the conditions described were caused or exacerbated by vaccines. Until very recently, the opinions and personal experiences of such critics often received media attention equal to that given to the consensus views of national medical and scientific organizations regarding vaccine safety.

The Internet has been similarly transformative in bringing together individuals and groups critical of vaccines and contemporary vaccine policy. Instead of the pamphlets common to early vaccine opposition movements, web sites, blogs, e-mail lists, and related media now allow parents to instantly compare their experiences, share theories regarding the causative role of vaccines, and coordinate activism on vaccine safety policies and legislation.

The Internet has also democratized access to scientific and medical knowledge among patients and parents. Despite frustration from some health care professionals, these changes help to promote an environment in which patients are engaged, informed, and active contributors to their own medical decision making. A related change with more mixed outcomes for medical knowledge and patient care is the massive growth in venues available for the publication of scientific research, many of which exist principally or exclusively online. The quality of these publications varies widely; publishing standards may be inconsistent, and peer review limited or nonexistent.

Patients or parents researching vaccines or other health topics may have difficulty distinguishing reputable sources of information from less trustworthy venues. In the case of vaccines, public discourse and public health may be jeopardized by the publication of research so flawed in design or analysis that valid conclusions cannot be reached. Much of the published research cited by proponents of the vaccine-autism link and similar theories has appeared in publications of dubious reputation and is rejected as scientifically unsound by mainstream researchers. However, the most prominent published science on vaccines and autism, the now-retracted 1998 paper by Andrew Wakefield and colleagues, appeared inThe Lancet, among the world’s premier medical journals. The gatekeeping function of scientific publication is not without flaws, but it remains one important safeguard in promoting the dissemination of valid, scientifically responsible research results.

Preserving and Promoting Vaccination in a Democracy

The pace of advances in scientific and medical knowledge today is only surpassed by the speed at which such information can be transmitted. Amid this changing climate, the core arguments of critics of vaccination have remained remarkably stable. Public health officials and other advocates of vaccination have largely focused their efforts on refuting specific claims against the safety and necessity of vaccines and the importance of school-entry requirements. The long-term success of this approach is questionable; recent experience suggests that new hypotheses appear more quickly than they can be conclusively refuted. For example, as evidence mounted against a link between the measles-mumps-rubella vaccine and autism, replacement theories began emerging, alleging that specific vaccine components, the timing and spacing of vaccination, or the overall vaccine schedule may actually be to blame. Maintaining a largely defensive, responsive posture to vaccine safety allegations may ultimately be ineffective.

A superior strategy for advocates of vaccines may be to use the current media and information environment to refocus attention toward the positive case for vaccines. A lesson from the long history of vaccine hesitancy and refusal is that the most strident critics of vaccine safety are unlikely to be swayed by any amount of evidence, particularly evidence produced by government scientists and academic researchers, groups whom they generally distrust. Meanwhile, growing numbers of parents who are not active participants in vaccine safety movements are expressing new concerns about the risks of vaccines. Directing efforts toward preserving the widespread foundation of support for vaccines that persists despite these controversies may be the most fruitful route to maintaining the success of vaccination programs [10].

Such work requires not merely a communications or marketing strategy by the public health community but a continued commitment to ensuring the safety of vaccines, assessing their benefits for individuals and communities, and implementing mandatory vaccination programs responsibly. Concerns in these areas have motivated opposition movements since the dawn of vaccination. While history suggests that broad consensus on the design and scope of vaccination programs is unlikely to be reached, all participants in these debates can work for respectful dialogue informed by the best available evidence [11]. In this way, citizens, scientists, and public officials can advance both the best ideals of a democracy and the health of its citizens.

References

1. Dempsey AF, Schaffer S, Singer D, Butchart A, Davis M, Freed GL. Alternative vaccination schedule preferences among parents of young children. Pediatrics. 2011;128(5):848-856.
2. Orenstein WA, Hinman AR. The immunization system in the United States—the role of school immunization laws. Vaccine. 1999;17 Suppl 3:S19-S24.
3. Durbach N. Bodily Matters: The Anti-Vaccination Movement in England, 1853-1907. Durham, NC: Duke University Press; 2005.
4. Wolfe RM, Sharp LK. Anti-vaccinationists past and present. BMJ.2002;325(7361):430-432.
5. Willrich M. Pox: An American History. New York: Penguin; 2011.
6. Vaccination stirs revolt. New York Times. February 5, 1906. http://select.nytimes.com/gst/abstract.html?res=F40C15FB3B5A12738DDDAC0894DA405B868CF1D3. Accessed December 15, 2011.
7. Willrich M. “The least vaccinated of any civilized country”: personal liberty and public health in the Progressive Era. J Policy Hist. 2008;20(1):76-93.
8. Jackson CL. State laws on compulsory immunization in the United States.Public Health Rep. 1969;84(9):787-795.
9. Colgrove J. State of Immunity: The Politics of Vaccination in Twentieth-Century America. Berkeley: University of California Press; 2006.
10. Schwartz JL. Unintended consequences: the primacy of public trust in vaccination. Mich Law Rev First Impressions. 2009;107:100-104. http://www.michiganlawreview.org/articles/unintended-consequences-the-primacy-of-public-trust-in-vaccination. Accessed December 15, 2011.
11. Gutmann A, Thompson D. Democracy and Disagreement. Cambridge, MA: Harvard University Press; 1998.

So it is perhaps a sort of progress that the British Medical Journal and the international Committee on Publication Ethics were able to organize a meeting on the subject in London last week, gathering representatives from universities, funders, journals and lobby groups to discuss how the problem could be tackled in the United Kingdom (see Nature http://doi.org/hmx; 2012). The meeting broke little new ground, but its organizers do, at least, deserve credit for trying.

A big part of the problem is the lack of perceived risk associated with misconduct. Some fraudulent researchers might be sociopaths who don’t care about the rules, but many others simply believe that they can anticipate the outcome of a research project, and see no downside to fabricating the required results to save time, or tweaking results to achieve a stronger signal. Either way, stronger action and punishments are needed to discourage such misbehaviour. (Meanwhile, for colleagues considering blowing the whistle, the risks are glaringly huge — witness the plight of scientists, such as cardiologist Peter Wilmshurst, who have raised questions and have faced the full force of Britain’s ludicrous libel laws as a result.)

Could publications such as this one do more to deter cheats? Unfortunately, we are often in no position to flag up even proven cases of misconduct, and thereby highlight the risks that miscreants run with their careers. Yes, it is a journal’s primary job to clean up the literature, but when papers are retracted owing to misconduct, the libel laws (again) often prevent our editors from saying so. We know that this leaves the affected communities frustrated and in the dark. It leaves us frustrated, too.

So, with journals unable to push towards greater integrity and universities often unwilling to do so, should funding agencies be leading the charge? It is, after all, their money that is wasted if misconduct does occur.

Funding agencies in the United States do sometimes investigate misconduct. Research funded by the National Institutes of Health and some other government agencies falls under the remit of the Office for Research Integrity (ORI), which has the power to bar researchers from receiving future funding. However, as Nicholas Steneck, director of the research-ethics programme at the Michigan Institute for Clinical and Health Research in Ann Arbor, told the London meeting, this process probably misses most major misconduct. And the ORI can’t initiate investigations: institutions must conduct their own inquiries first.

In the United Kingdom, there seems to be little appetite for launching an overarching ORI-type regulator. Certainly, the existing independent advisory group, the UK Research Integrity Office in Falmer, is clear that it has no desire to take on such a role. British funding councils — in collaboration with the country’s universities — have chosen instead to produce a ‘concordat’ detailing good practice, to which institutions will be expected to sign up. This is laudable, but unlikely to strike fear into fraudsters and fabricators.

So, how can Britain highlight cases of misconduct and discourage it in future? Ultimately, the incentives probably need to come from on high, and the government could get the ball rolling by commissioning an anonymous survey on misconduct that UK researchers have witnessed and perpetrated. An official audit would offer a strong platform for others to build on — perhaps with a parliamentary inquiry and subsequent report on the damage done to UK science by misconduct, and an assessment of the options for tackling it and the investment needed. Funders and universities could then work together to establish common definitions of what counts as misconduct, and how it will be punished. And if a reform of the libel laws goes ahead, journals and other scientists would be able to do more to highlight and expose miscreants.

Sounds ambitious? If the solutions were easy, there wouldn’t be a problem to discuss. But there is, so we must face it.

Obama implores Congress not to “gut” investments in research, so American can maintain its spot as a world leader in medical innovation. That line will earn applause from the pharmaceutical and medical device industries, but it won’t be enough to deliver a health care economy that delivers a “fair shot” to everyone.

The president held out the continued possibility of saving health care costs with Medicare reform. “As I told the speaker this summer, I’m prepared to make more reforms that rein in the long term costs of Medicare and Medicaid, and strengthen Social Security, so long as those programs remain a guarantee of security for seniors,” Obama said. “But in return, we need to change our tax code so that people like me, and an awful lot of members of Congress, pay our fair share of taxes. Tax reform should follow the ‘Buffett Rule’:  If you make more than $1 million a year, you should not pay less than 30 percent in taxes.”

And he rebutted Republican accusations that his signature 2010 health reform law amounts to socialized medicine. “I’m a Democrat. But I believe what Republican Abraham Lincoln believed: That government should do for people only what they cannot do better by themselves, and no more,” he said. “That’s why our health care law relies on a reformed private market, not a government program.”

Obama makes it clear that he sees the giant health care sector as a place ripe for jobs growth. The American Association of Medical Colleges projects a shortage of 90,000 doctors over the next 10 years. It’s more than double that for the nursing industry, where the American Nursing Association sees a potential shortage of 260,000 nurses by 2025. These shortfalls will only be worsened as an additional 30 million people get health insurance under the 2010 health reform law.

But a national workforce commission established under the health care law has been chronically underfunded by Congress. The training programs that will be needed to fix these shortages have a slim to little chance of getting any funds. Appropriators have no room to give precious federal dollars to new programs while they are slashing old sacred cows in the austere spending environment that has reigned on Capitol Hill since Republicans took the House in 2011.

And while investments in research are nice, what medical device companies want even more is for Congress to take back a $20 billion tax it imposed on the industry to help cover the cost of the health reform law. Stephen Ubl, president of Advamed, a medical device lobbying association, says the tax is already causing layoffs.

Obama doesn’t get a break from hospitals either. The American Hospital Association says a coming 2 percent cut to Medicare and other cuts will cost them 278,000 jobs as revenue drops from Medicare and Medicaid. In the health care world, federal funds are the spigot for job creation, and no State of the Union speech is going to change the spending environment on Capitol Hill.

Seven years ago, he suffered a paralyzing stroke. Today he can only move his head, cannot speak and needs constant care.

And he wants to die.

To try to ensure that whoever ends his life won’t be jailed, the 57-year-old Nicklinson recently asked Britain’s High Court to declare that any doctor who gives him a lethal injection with his consent won’t be charged with murder. This week, the court will hold its first hearing on the case.

“Most people who want to die, who are physically able to do so, can lawfully commit suicide,” said Nicklinson’s lawyer, Saimo Chahal.

But that’s not the case for Nicklinson, who has “locked-in syndrome” — a condition in which a person’s body is paralyzed but mind intact.

Under U.K. law, anyone who helps Nicklinson die could be charged with murder, even if they are carrying out his wishes. A murder charge has a mandatory life sentence, regardless of the motive or circumstances.

No one suspected of aiding a loved one’s suicide has been charged with such a crime in Britain in recent years. But Nicklinson doesn’t want to take any chances. Instead he wants to change the legal definition of murder to exclude euthanasia, arguably a long shot.

Emily Jackson, a medical law expert at London’s School of Economics, said Nicklinson may have a plausible case. “He is making a very interesting argument,” she said.

Euthanasia is legal in the Netherlands but requires a long-term relationship between doctors and patients, a rule that excludes most foreigners. Assisted suicide is legal in Switzerland, including for foreigners, but Nicklinson does not want to go there to die.

Nicklinson argues that British law hinders his right to “private and family life” — guaranteed by the European Convention on Human Rights — on the grounds that being able to choose how to die is a matter of personal autonomy.

“He argues that it’s unfair on him and that a humane legal system would enable somebody in his circumstances, with considerable safeguards, to get help from a doctor to exercise a right, which he has in theory, but is deprived of in practice,” Chahal said.

The Ministry of Justice has applied to dismiss Nicklinson’s suit since it could involve changing the law — which must be done by Parliament, not the High Court.

Nicklinson communicates mostly by using a computer that detects his blinking. In a statement, he described his life as “dull, miserable, demeaning, undignified and intolerable.”

He has refused since 2007 to take any life-prolonging drugs recommended by doctors, including heart drugs or blood thinners. He only takes medicines to make himself more comfortable, such as those to reduce muscle spasms. His wife, Jane, a trained nurse, said he could be at risk of another stroke or a heart attack.

Jane described her husband as “a real alpha male” who was very active before his stroke. “He was tall, dark and handsome,” she says of the night they met on a blind date in Dubai. The two later also lived in Hong Kong, Malaysia and Britain with their two daughters. Nicklinson chaired a sports club that ran rugby events in the United Arab Emirates, mixing with elite players and officials.

“It was a dream come true for him,” his wife said.

Jane said she and their two grown daughters didn’t initially agree with her husband’s choice to die. “It was very upsetting and obviously it’s not what we want, but it’s what he wants and it’s his life,” she said.

Nicklinson spends most of his days at a computer he controls by blinking, writing emails and surfing the web. Jane said he rarely leaves his room in their bungalow in rural Wiltshire, southwest England, except to watch television in the evenings. He’s also writing his memoirs.

It’s amazing what he remembers,” his wife said. “His mind is completely unaffected.”

Like the renowned physicist Stephen Hawking, who recently turned 70, Nicklinson has not lost any of his intellectual capacities. Hawking has Lou Gehrig’s disease, a degenerative condition that kills most people within a few years. He has repeatedly said he doesn’t think about his physical limitations, which haven’t prevented him from revolutionizing the understanding of black holes and the origins of the universe.

A recent British commission headed by a former justice secretary concluded there was a strong case for allowing assisted suicide under strict criteria. The commission was set up and funded by campaigners who want the current law changed. The report did not support euthanasia and recommended assisted suicide only be allowed for terminally ill people, which would exclude Nicklinson.

In 2009, the British government’s top prosecutor said people who helped terminally ill relatives and friends die were unlikely to be charged if they acted out of compassion. From 2009 to 2011, 40 cases of people suspected of helping loved ones die were reported to the government prosecutor; none was charged.

In 2002, the Netherlands became the first country to legalize euthanasia, allowing doctors to end the lives of patients whose suffering is “unbearable and hopeless” — not just those with terminal illnesses. In recent years, the country’s rates of euthanasia and physician-assisted suicide have risen slightly, but still account for less than 3 percent of all deaths.

Switzerland allows doctors to prescribe a fatal dose of medicine for patients to take themselves. Since 2001, more than 160 Britons have traveled to the Dignitas clinic, near Zurich, to die.

Nicklinson considered going to Switzerland, but his wife said he decided against it for several reasons, including the approximately 6,500 pound ($10,000) cost. Nicklinson is currently receiving legal aid from the government to cover most of his lawyer’s fees.

Euthanasia is also legal in Belgium, Luxembourg and the state of Oregon in the United States.

Critics of euthanasia say the U.K. should focus more on improving care for the chronically and terminally ill instead of legislating mercy killing.

“I’m massively sympathetic to (Nicklinson’s) situation, but I don’t think we should change the law when it will impact hundreds of thousands of other people,” said Dr. John Wiles, chairman of Care Not Killing, an alliance that opposes euthanasia. He warned that legalizing euthanasia might worsen treatment of elderly people and the terminally ill.

Wiles doubted enough safeguards could ever be in place. “However narrow you try to make it, in principle, we would be allowing the killing of other members of society for the first time,” he said. “If we change the law, we’ll be saying to people, ‘If you don’t like the care you’re getting, you can just end it.’”

The British Medical Association also opposes any changes that would permit assisted suicide or euthanasia. While patients have the right to their medical records, the group advises doctors to refuse to share such reports if they suspect the information will be used to commit assisted suicide abroad.

Nicklinson’s wife, Jane, said her husband simply wants the right to choose when to end his life. She said he began asking to die as soon as he could start communicating after his stroke, once he realized he wouldn’t improve.

“I’ve tried many times to change his mind, but he is adamant to see this through,” she said.

“Scientists at the University of Wisconsin in the United States and at Erasmus University Medical Center in the Netherlands say they are voluntarily halting their work for 60 days,” stating “the two months will give governments, international organizations and the scientific community time to determine whether the research can be conducted safely,” VOA News writes (1/21). The WHO is expected to organize a forum in the coming weeks to discuss the issue, Agence France-Presse reports (Sheridan, 1/21). “Suspensions of biomedical research are almost unheard of; the only other one in the United States was a moratorium from 1974 to 1976 on some types of recombinant DNA research, because of safety concerns,” the New York Times notes (Grady, 1/20).

Trading life-saving meds for cash highlights the relationship between employment and eligibility requirements for programs such as the AIDS Drug Assistance Program (ADAP) or HIV/AIDS Services Administration (HASA), as some HIV-positive individuals have to choose between holding a job and keeping benefits from these types of assistance programs. It also raises the question of how advocates can help people living with HIV better understand their options when receiving health care, so that they won’t feel pressured to partake in illegal activity.

The Uptowner reported:

Street sales have been particularly noticeable near uptown subway stations for more than six years, according to Dr. Michael Mowatt-Wynn, the president of Precinct 33’s Community Council. Prescription painkillers are prevalent, but the most popular drugs aren’t addictive and don’t produce any kind of high: HIV antiretroviral medications. …

[...] “I saw a mother with children in tow, no more than 5 or 6 years old,” Mowatt-Wynn says. “She was selling her HIV medicine, saying she needed to get food for her children. So she was basically selling herself. It’s a form of medical prostitution — that’s what we call it.”

In other countries, HIV medication is expensive and uncommon, making it a lucrative product for the black market. Buyers stand around the more popular uptown subway stations as if it’s a full-time job. From 9 to 5 Monday through Friday, they’re buying prescription medication from people who will use the proceeds to buy food, pay bills or fuel an addiction. Pharmacists then buy and repackage the drugs so they’ll sell for higher prices and ship them to countries with high demand, like the Dominican Republic and Mexico, [Pablo] Colon [the senior HIV counseling and treatment specialist at the New York City HIV organization Iris House] says.

According to The Uptowner, as a way to deter these sales, the “council and [33rd] precinct have instituted new policies to try to reduce the drug trade, placing cameras on lampposts at the most popular subway stations and stationing patrol officers nearby.”

City Limits also reported on the same issue:

… [A] bill sponsored by New York Sen. Kemp Hannon and passed by the Senate in June could close that gap if approved by the assembly this year.

The bill identified an “exploding black market in non-controlled substance medications,” including AIDS medications that are either sold to pharmacies or shipped overseas. Under the bill, first degree “criminal diversion of prescription medications and prescriptions” moves from a C felony (with likely maximum jail time of five to 15 years) to a B felony, for which the maximum is eight to 25 years.

Pharmacists play a crucial role in the trafficking as well. Ms. Cruz, who has sold her medications in the past, provided City Limits with the following scenario:

The HIV [positive] patient calls to let the pharmacist know in advance that it’s not really the pills he or she is interested in buying, but something else. Upon arrival at the pharmacy, the pharmacist scans the barcode on the bottle of pills, and then hands over a plastic bag filled with a few hundred dollars, instead of the medication.

The pharmacist can then sell the pills back to drug dealers or ship them directly overseas.

Have you ever considered selling your AIDS meds to make ends meet?

[Editor's note: Sadly, Pablo Colon passed away on Dec. 30, 2011, at the age of 49.]

Warren Tong is the associate editor for TheBody.com and TheBodyPRO.com.

Neurologists asked her questions and issued commands as they pinpointed the exact spot in her brain for electrical stimulation. At one point, “I suddenly felt hopeful and optimistic about the future,” recalls Ms. Battiloro, who had battled severe depression for more than a decade. That’s when the doctors knew they had found Brodmann 25, an area deep in the cerebral cortex associated with negative mood. They secured the electrodes in place, then sedated Ms. Battiloro while they ran an extension wire under the skin, down the side of her head and into her chest, where they implanted a battery pack to supply her brain with a mild electrical current.

Within two months, Ms. Battiloro says, her depression had lifted considerably. Now, nearly four years later, it hasn’t returned. “My friends and family are amazed,” say Ms. Battiloro, 41, of Boynton Beach, Fla. “I’m a new and improved Lisa.”

Deep brain stimulation, sometimes called a pacemaker for the brain, has helped halt tremors in more than 100,000 patients with Parkinson’s disease and other movement disorders since 1997. Now, researchers are reporting encouraging results using the procedure for psychiatric conditions as well. Ms. Battiloro was one of 17 patients in a study published this month in the Archives of General Psychiatry. After two years of DBS, 92% reported significant relief from their major depression or bipolar disorder and more than half were in remission, with no manic side effects.

“We are seeing dramatic effects in the small numbers of subjects, and they are not just getting well, they are getting well without side effects and without relapsing,” says neurologist Helen Mayberg, who led the study at Emory University in Atlanta.

Other clinical trials are studying DBS as a treatment for epilepsy and obsessive-compulsive disorder; some researchers are experimenting with it for Alzheimer’s disease, tinnitus, addiction and Tourette syndrome, a condition that causes sudden movements and tics. But such uses could be many years away. “DBS is a potential treatment for any condition where you have a good idea which brain regions aren’t functioning appropriately,” says Paul Holtzheimer, director of the Mood Disorders Service at Dartmouth-Hitchcock Medical Center, who collaborated on the study while at Emory. “But you need to do the clinical trials and have good evidence of the safety and efficiency to balance the invasiveness of the surgery.”

Neurologists don’t know exactly how DBS improves brain function. But there is growing recognition that the brain operates via complex electrical circuits that sometimes malfunction, and that electrical stimulation can interrupt the errant signals. Years ago, scientists noticed that Parkinson’s disease involved excess activity in the brain’s subthalamic nucleus—a spot about the size of a pea in the basal ganglia. In essential tremor, an even more common disorder with involuntary shaking, the target is the ventrointermediate nucleus, just a few millimeters away.

Pinpointing depression in the brain has been trickier, since it involves multiple brain circuits that control mood, thought, sleep, reward and other functions. Dr. Mayberg’s team spent years scanning the brains of depressed patients and noticed that many who got better had changes in Brodmann Area 25, whether they were treated with medication, psychotherapy or electroconvulsive therapy. Other researchers are targeting different spots in the brain that may play a role in depression. Larger clinical trials are under way, but Food and Drug Administration approval of DBS for depression is still several years away.

In movement disorders, the results can be dramatic—even in the operating room when the electrodes are first tested. “They say, ‘Hold up your hands and all of a sudden, there is no tremor!” says Pamela Bland, a former nurse from Dunnellon, Fla., who was diagnosed with Parkinson’s in 2000 and couldn’t walk, talk or get out of bed at the time she had the surgery at the University of Florida in Gainesville in 2008. Now she drives, kayaks and even completed a recent 5-K race. “There’s not much I can’t do,” says Ms. Bland, now 62.

It can take months to fine-tune settings on the battery pack and adjust medications to give patients optimal movement control. But in rare cases, the surgery alone seems to reset the brain circuits. Tom Rogers, a former truck driver who could no longer drive, write or drink from a glass due to severe tremor, had the electrodes implanted last summer and his shaking stopped immediately—even though the electricity has never been turned on. “My hand is steady as a rock,” marvels the 66-year-old Oswego, Ill., resident.

Researchers think the same phenomenon may explain why patients in the control groups of some DBS trials have improved after their electrodes were implanted but before the current was turned on.

That control benefit was also seen in a study published in the journal Lancet Neurology last week. Some 136 Parkinson’s patients in 15 centers in the U.S. received a DBS system made by St. Jude Medical Inc., which is hoping to win FDA approval to market it in the U.S. In half the patients, the devices weren’t turned on for three months to serve as a control group. Nearly 40% of the control subjects reported gaining at least two more hours of good movement control per day, compared with 73% of the group undergoing active stimulation. On average, those with the active devices increased their hours of good movement control from 6.3 hours to 11 hours per day. As of now, Medtronic Inc. makes the only DBS devices approved for sale in the U.S.

Only 10% to 15% of Parkinson’s patients are good candidates for DBS, says Michael Okun, medical director of the National Parkinson Foundation. It’s most useful for people experiencing tremor, stiffness and other movement problems but not other cognitive problems or health issues. DBS isn’t a cure for Parkinson’s; the disease still progresses. And as with other surgeries, there is a risk of infection, stroke or other complications. Some patients find their speech slurred after the surgery, and others report falling issues.

Still, demand for DBS is rising steadily. “In the beginning, it was tough to get patients onto the table. Now it’s the opposite,” says Dr. Okun, who performs many DBS operations a year at the University of Florida’s Center for Movement Disorders. The procedure, which costs about $60,000 including hospital fees, is generally covered by Medicare and private insurers for Parkinson’s, essential tremor and dystonia, another movement disorder.

Although some neurologists are offering DBS for depression even before it wins FDA approval, experts urge people with severe, treatment-resistant depression who are interested in DBS to enroll in a clinical trial, where they can be carefully monitored.

PROFILES OF DBS PATIENTS

Lisa Battiloro

Lisa Battiloro was diagnosed with major depressive disorder at age 22 in 1992 and began a frustrating treatment odyssey. “I tried many pharmaceuticals,” she says. “I tried cognitive-behavior therapy. I had 122 shock treatments. At first they helped, but they started to help less and less. I also had TMS (transcranial magnetic stimulation, another form of electrically recharging the brain.) I got no response to that at all.”

Her physician knew of Helen Mayberg’s work at Emory University. Ms. Battiloro went for an interview, applied, was accepted and was one of the first 17 patients in 2008. She was determined not to get her hopes up. “I was thinking, ‘If this treatment doesn’t work, there’s always suicide,’ ” she recalls.

She felt somewhat better immediately after the surgery—even though she now knows she was part of a control group whose devices weren’t turned on for another month. After the second month (with the current active), “It was a consistent climb. I was sleeping better. I wasn’t binge eating. I didn’t have any suicidal thoughts.” Ms. Battiloro has now renewed her nursing license and hopes to resume her career.

She can’t go through airport scanners or have an MRI, and she does have a scar on her chest where the battery pack is implanted. “That’s my badge of courage,” she says. “But I don’t have that feeling of dread, that numbness anymore. It’s been consistent and stable. I still have the occasional off day, but everybody does, and now I’m able to get up and get on with my life.”

* * *

Matthew Miller was 8 years old when his hands started shaking. It went away in his teenage years but returned in his 20s, when he was diagnosed with essential tremor, a movement disorder that is 10 times more common than Parkinson’s disease and often runs in families. Medications can control it temporarily, but Mr. Miller built up a tolerance to each one and he was exhausted trying to sit still and work at a computer.

“It was even difficult socially—you don’t dare go to a restaurant because your food will fly everywhere,” he says.

Mr. Miller was the first patient to be treated with Deep Brain Stimulation for essential tremor at Swedish Medical Center in Seattle in 2005. The operation, since streamlined, took 12 hours. In tremor patients, the surgeons listen for a specific kind of static on a Geiger-counter like device to know they are stimulating the right area, and other tests confirmed it. “I drank from a cup. I wrote my name. I drew a straight line,” he says. (See a video of Mr. Miller that shows the device on and off.)

His device uses a battery pack on each side of his chest, which can be programmed separately. The tremors stop naturally while he’s asleep, so he turns the DBS at night with a remote-control device.

“Once everything is turned on and working, you understand why you did this,” says Mr. Miller, now 43, who is steady enough to work as a nurse’s aide in a children’s hospital. Some tasks, like typing and shaving, are still challenging. And like other DBS patients, he finds his emotions are heightened: “Some people laugh uncontrollably. Some people cry. A friend of mine with Parkinson’s says he cries at railroad crossings.”

All in all, he says, “It’s not perfect, but it’s pretty amazing. People with this condition should try it—they don’t need to keep hiding.”

* * *

Paul and Mary Ann Kelley

Paul Kelley was only 30 when he was diagnosed with Parkinson’s disease. He had to leave his job as a probation officer in Tallahassee, Fla., and take an administrative post because he couldn’t carry a gun. By the time he decided on deep brain stimulation, at age 44, he couldn’t work or operate a computer or walk.

A few days after the electrical current was switched on, he and his wife drove from the hospital in Gainesville to Disney World in Orlando. “I couldn’t keep up with him, he was walking and talking so fast,” recalls MaryAnn Kelley.

In fact, the settings on his battery pack were too high. It took several months of adjustments to get the speed and intensity just right. Much of Mr. Kelley’s tremor and jerky movements are under control now, and he’s been able to reduce his medication from 15 pills a day to four. The procedure has made his speech more difficult, however, and left him more emotional.

The Kelleys know that Paul’s Parkinson’s disease will continue to progress in the future. But for now, DBS “has given us our life back, in a lot of ways,” says Mrs. Kelley. “He’ll never be able to work again, but he coaches our son’s baseball team. He plays golf. We go camping. We want to do as much as we possibly can as a family before we see the downside again. Next, we’re going to go white-water rafting.”

Many researchers have found evidence that such payments can influence doctors’ treatment decisions and contribute to higher costs by encouraging the use of more expensive drugs and medical devices.

Consumer advocates and members of Congress say patients may benefit from the new standards, being issued by the government under the new health care law. Officials said the disclosures increased the likelihood that doctors would make decisions in the best interests of patients, without regard to the doctors’ financial interests.

Large numbers of doctors receive payments from drug and device companies every year — sometimes into the hundreds of thousands or millions of dollars — in exchange for providing advice and giving lectures. Analyses by The New York Times and others have found that about a quarter of doctors take cash payments from drug or device makers and that nearly two-thirds accept routine gifts of food, including lunch for staff members and dinner for themselves.

The Times has found that doctors who take money from drug makers often practice medicine differently from those who do not and that they are more willing to prescribe drugs in risky and unapproved ways, such as prescribing powerful antipsychotic medicines for children.

Under the new standards, if a company has just one product covered by Medicare or Medicaid, it will have to disclose all its payments to doctors other than its own employees. The federal government will post the payment data on a Web site where it will be available to the public.

Manufacturers of prescription drugs and devices will have to report if they pay a doctor to help develop, assess and promote new products — or if, for example, a pharmaceutical sales agent delivers $25 worth of bagels and coffee to a doctor’s office for a meeting. Royalty payments to doctors, for inventions or discoveries, and payments to teaching hospitals for research or other activities will also have to be reported.

The Obama administration estimates that more than 1,100 drug, device and medical supply companies will have to file reports, generating “large amounts of new data.” Federal officials said they would inspect and audit drug company records to make sure the reports were accurate and complete.

Companies will be subject to a penalty up to $10,000 for each payment they fail to report. A company that knowingly fails to report payments will be subject to a penalty up to $100,000 for each violation, up to a total of $1 million a year.

Top executives are potentially liable because a senior official of each company — the chief executive, chief financial officer or chief compliance officer — must attest to the accuracy of each report.

The new requirements, or something very similar, will take effect soon; in fact, they are overdue. Under the new health care law, the administration was supposed to establish payment-reporting procedures by Oct. 1, 2011. The public will have until Feb. 17 to comment on the proposals, which are broadly consistent with the expectations of industry and consumer groups. After considering the comments, Medicare officials will issue final rules with the force of law.

Consumer advocates have long demanded details of the financial ties between doctors and drug and device companies.

Allan J. Coukell, a pharmacist and consumer advocate at the Pew Charitable Trusts, said: “Patients want to know they are getting treatment based on medical evidence, not a lunch or a financial relationship. They want to know if their doctor has a financial relationship with a pharmaceutical company, but they are often uncomfortable asking the doctor directly.”

In an introduction to the proposed rules, the Obama administration says that patients can benefit when doctors and the industry work together to develop life-saving drugs and devices. But, it said, these relationships can also “lead to conflicts of interests that may affect clinical decision-making” and “threaten the underlying integrity of the health care system.”

The administration does not try to define the difference between proper and improper payments. It says simply that public reporting of the financial ties between doctors and drug and device companies “will permit patients to make better-informed decisions when choosing health care professionals and making treatment decisions.”

The new standards carry out legislation championed by Senators Charles E. Grassley, Republican of Iowa, and Herb Kohl, Democrat of Wisconsin. The legislation was included in the 2010 health care overhaul.

“The goal is to let the sun shine in and make information available to foster accountability,” Mr. Grassley said.

Christopher L. White, executive vice president of the Advanced Medical Technology Association, which represents makers of medical devices, said the payment data could be used by federal law enforcement agencies, plaintiffs’ lawyers and whistleblowers.

“Some companies fear that doctors may no longer want to engage in consulting arrangements, and such reluctance could chill innovation,” Mr. White said.

Matthew D. Bennett, a senior vice president of the Pharmaceutical Research and Manufacturers of America, said the industry “supported transparency of physician payment information.” However, he said, it is important that payment data be presented in a proper context, emphasizing that interactions between doctors and drug companies played a critical role in improving care, educating doctors and fostering appropriate use of medicines.

Medicare and Medicaid, the programs for older Americans, the disabled and the poor, spend more than $100 billion a year on drugs and devices.

Although the Congressional Budget Office does not predict immediate savings, it has said that, “over time, disclosure has the potential to reduce spending,” by reducing instances of overprescribing.

The law also requires drug and device companies to report the amount of “any ownership or investment interest” held by doctors or their immediate family members, other than holdings of publicly traded stocks.

The administration intends to apply the same disclosure requirements to doctor-owned companies that distribute medical devices. Such companies allow doctors to benefit financially from sales of devices they use in surgery.