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Theresa Schindler Schiavo : Who Decides to End Treatment for the Incapacitated (last updated March 22, 2005) (back to top) Congress considered and passed over the weekend an act giving the parents of Florida resident Theresa Marie Schindler Schiavo the standing to bring a suit in federal court to resume medical treatment that had been withdrawn on Friday, March 18. President George W. Bush signed the bill into law on March 21, saying (transcript on-line here) that "in cases like this one, where there are serious questions and substantial doubts, our society, our laws, and our courts should have a presumption in favor of life." Federal District Judge Dames D. Whittemore subsequently heard arguments in the case on Monday, March 21. He reportedly ruled on Tuesday, March 22 that Schiavo's parents were not likely to win on the merits and that he would not order the resumption of medical treatment. Schiavo's parents reportedly plan to appeal the case further. Relatives of Florida resident Theresa Marie Schindler Schiavo, who has been incapacitated since 1990, have been fighting since the late 1990s over whether medical treatment and feeding tubes should be withdrawn given her condition. Schiavo's husband Michael, as her guardian, has decided that she would want to withdraw medical treatment, though Schiavo's family has contested Michael Schiavo's fitness as a guardian. Their fight first became a national issue in 2003 when the Florida legislature and Florida Gov. Jeb Bush tried to stop the withdrawal of medical treatment through legislation and an executive order that were later declared unconstitutional. The fight reached a new level when a state court judge ruled in February 2005 that medical treatment could be withdrawn on March 18. It is worth noting that the entire controversy could have been avoided if Theresa had thought ahead and prepared an advance directive stating what she would want in such circumstances. The United States Supreme Court and many states have recognized that people have the right to decide when to end medical treatment and when to refuse it, and the only legal controversies arise when people did not formally express their preferences before falling into a non-communicative state. Relatively few Americans have prepared such orders, according to some surveys. Only 9 percent of hospital patients surveyed under the age of 30 had done so, according to a 1993 study by the Department of Health and Human Services' Office of the Inspector General.
 Surgeon General Controversies (last modified January 13, 2002) (back to top) Officially, the Surgeon General is a largely symbolic office as the head of the Public Health Service. The office and service has a small budget in comparison to most federal agencies, and the Surgeon General has no official policy-making authority, though it has sometimes been given such power by being tied to an assistant secretary position in the Department of Health and Human Services and its predecessors. Regardless, because of its bully pulpit status as the nation's leading public health expert, the Surgeon General has become a controversial position in the past few decades, particularly on issues involved sexuality and sex education. For example, most famously, Dr. Jocelyn Elders, Bill Clinton's first Surgeon General, was asked to resign in December 1994 after she tentatively endorsed the teaching of masturbation as a way of fighting the spread of AIDS among children; this comment led to her resignation but was only the last in a string of such blunt comments. But controversy has surrounded the office long before and long after Elders' situation. Even Dr. C. Everett Koop, the extremely popular Surgeon General appointed by President Ronald Reagan, faced much criticism in the 1980s for his viewpoints on abortion, AIDS and smoking. Koop was initially criticized by liberals because he had no formal experience in public health and was a vocal pro-life activist; he was confirmed 68-24 in November 1981 but later described the process as one of the worst experiences of his life. Once in office, Koop reinvigorated the Surgeon General's office's warnings about the dangers of smoking and called for a smoke-free society by the year 2000 (Dr. Jesse L. Steinfeld, the Surgeon General under President Richard M. Nixon, stepped down in 1974 and has said that he believes he was asked to resign because of his concerns about secondhand smoke and television violence). He then became the nation's chief spokesman on AIDS; his report released on October 22, 1986, which he researched and wrote mostly himself, was explicit, nonjudgmental, and extremely popular and led the way for a pamphlet sent to most American households. Despite his own pro-life leanings, Koop advocated sex education in grade schools and the use of condoms, criticized ideas for quarantines, and called for tolerance. "Overnight," Koop told an interviewer for the book Plagues and Politics, "I lost the constituencies I'd had, which included right-wing conservatives, right-wing religious bodies, pro-life people and I gained all the liberals and moderates that weren't already with me. And I got the blessings of the people in public health." Koop left office in 1989 and is still highly regarded as a public health expert; recently, he even lent his name to a now-failed Internet venture aiming to distribute public health information. His successor as Surgeon General, Antonia C. Novello, served from 1990 to 1993 and focused her attention on the health of women, children and minorities. Bill Clinton nominated Jocelyn Elders as Surgeon General in July 1993 and she was controversial from the very beginning. A pediatric endocrinologist who had been director of the Arkansas Public Health Department when Clinton was that state's governor, Elders was known for supporting sex education among children to prevent unwanted pregnancies. Conservative groups quickly attacked her and one dubbed her a "condom queen," an apparent allusion to Lani Guinier, another black woman who had been nominated for a position in the Clinton administration and had been opposed for some of her views on voting rights and quotas. Questions about potential financial improprieties also surfaced in the six-month campaign to derail her nomination. Finally, she was confirmed by the Senate in a 64-34 vote in September 1993. Controversy continued to follow her into the job. Just months into office, in December 1993, when asked if drug legalization would reduce the number of violent crimes. Elders said that doing so could "markedly" reduce violent crime and recommended that the government should study the issue. White House spokeswoman Dee Dee Myers said that such a study was not going to happen, though Clinton quickly stated that he stood behind Elders "foursquare" and that she was still in good standing with him. In a disturbing coincidence, her own son was arrested for cocaine possession a few weeks after Elders' statement. A year later, in December 1994, in response to a question at a United Nations conference on AIDS, Elders tentatively condoned the teaching of masturbation to schoolchildren as a way of preventing the spread of the AIDS virus. "I think that is something that is a part of human sexuality and it's a part of something that perhaps should be taught. But we've not even taught our children the very basics," she said, according to a New York Times account. The exchange had not yet been publicized, but the Clinton administration pre-empted news coverage by demanding Elders' resignation on December 9, 1994. White House officials said that Donna Shalala, the Secretary of Health and Human Services, had previously warned Elders to be more discreet, and that Elders' response to the masturbation question was the final straw. Clinton said later that he had demanded the resignation because "at some point, the President is entitled to have people in certain positions who agree with him, and who don't depart from the policy positions and personal convictions that a President has." Saying that she was not bitter about the dismissal but simply surprised as to how people had interpreted her comments, Elders resigned from office and went back to the University of Arkansas School of Medicine, where she had been a professor of pediatrics for more than two decades. "I regret that some of the words I have uttered about these and other matters have caused discomfort. But I regret even more the realities they describe," she wrote in a December 18, 1994 New York Times op-ed piece. "Sexual practices are, of course, best left to consenting adults, behind closed doors. But sex becomes a proper subject for government when sexual behavior endangers public health, as is clearly the case with AIDS and other diseases, or when it leads to increased poverty, ignorance and enslavement, as is the case with unplanned, unwanted children." Replacing Elders proved to be difficult and ultimately would take more than three years. In February 1995, Clinton nominated Dr. Henry W. Foster as Elders' replacement. Generally a political conservative, Foster was best known for founding the I Have A Future Teen Pregnancy Reduction Program, which taught teenagers living in housing projects to delay sex and childbearing through a variety of services. But Foster soon found himself under attack over how many abortions he had performed (he initially told White House officials that he had performed less than a dozen abortions in his career, though records indicated he was the physician of record for 39 abortions). Ultimately, Democrats could not overcome a Republican filibuster and the nomination died in June 1995. Clinton did not nominate another doctor to serve as Surgeon General for more than two years. Finally, he nominated Dr. David Satcher, then the head of the Centers for Disease Control and Prevention, in the fall of 1997. Satcher was quickly attacked by conservatives led by Senator and future Attorney General John Ashcroft (R-Missouri) for opposing a full ban on partial-birth abortions; Satcher said he did not support the procedure but that he would support a ban only if it made exceptions for cases in which the procedure was needed to protect the life or health of a pregnant woman. He was finally confirmed by a 63-35 vote on February 10, 1998 and took office three days later. Satcher has continued to serve as Surgeon General into the Bush administration. His time has been politically much quieter than his predecessors, though he still advocates on the broad issues that undermined Elders and Foster. In June 2001, he issued a long-awaited public report calling for new action to promote sexual health and responsible sexual behavior (for more on this report, go here). In the report, Satcher called for more comprehensive and scientifically accurate sexual education and cast some doubt on the federal government's support of programs teaching abstinence to delay sexual activity among teenagers. The report, The Surgeon General's Call to Action to Promote Sexual Health and Responsible Sexual Behavior, had been originally scheduled to be released in the fall of 2000 but was delayed for what some feel political reasons. Satcher released the report by himself, whereas he had released other reports with the secretary of health and human services, Tommy G. Thompson. The report simply stated that it was "too early to draw definite conclusions" about the effectiveness of abstinence-only programs. At the same time, it recommended that education "stress the value and benefits of remaining abstinent until involved in a committed, enduring, and mutually monogamous relationship" but also "assure awareness of optimal protection from sexually transmitted diseases and unintended pregnancy, for those who are sexually active, while also stressing that there are no infallible methods of protection, except abstinence." Despite such muted language, White House spokesman Ari Fleischer backed away from the report during a June 2001 press conference, pointing out that it was issued by a Surgeon General from a prior administration but not going so far as to say that Satcher lacked Bush's confidence or should resign. Fleischer also said that Bush believes that sex education is a matter for local control and that Bush "continues to believe that abstinence and abstinence education is the most effective way to prevent AIDS, to prevent unwanted pregnancy." In November 2001, Satcher said he would leave office when his term ended in February 2002, giving Bush the opportunity to appoint a new Surgeon General. Sources: Fitzhugh Mullan, Plagues and Politics: The story of the United States Public Health Service (Basic Books, 1989). Douglas Jehl, Surgeon General forced to resign by White House, New York Times, December 10, 1994. Dr. Jocelyn Elders, Someone had to speak up, New York Times op-ed, December 18, 1994. Francis X. Clines, Clinton's choice for top doctor is rebuffed by a vote in Senate, New York Times, June 23, 1995. Sheryl Gay Stolberg, Job itself in doubt as new feud looms on Surgeon General, New York Times, February 5 1998. The Office of the Surgeon General is on-line here. Surgeon General David Satcher's report, The Surgeon General's Call to Action to Promote Sexual Health and Responsible Sexual Behavior, is available here. Ari Fleischer's press briefing in which he is asked about the report is available here. Diana Jean Schemo, Promised sex-ed report languishes, New York Times, April 21, 2001. Diana Jean Schemo, Surgeon General's report calls for sex education beyond abstinence, New York Times, June 29, 2001. Gina Kolata, No second term for Surgeon General, New York Times, November 6, 2001. Patient's Bill of Rights and HMOs (last updated August 14, 2001) (back to top) The fight over patients' rights is a reaction to the changing nature of American healthcare and a 1974 law that many feel has not kept pace. With about 30 percent of the United States population enrolled in a health-maintenance organization, the patients' rights debate centers on how enrollees in these and other managed-care plans can use the legal system to hold such plans financially accountable for their actions. Under current federal law, people enrolled in health plans are generally barred from suing managed care organizations and other insurers. Managed-care organizations and other employee benefit plans are strictly regulated by the Department of Labor under the federal Employee Retirement Income Security Act of 1974, and thus are exempt from many state laws; many courts have dismissed lawsuits against HMOs because of this preemption clause, though others have allowed suits based on the quality of care offered, rather than the denial of benefits. Congress has failed to achieve a workable patients' rights bill in recent years; the House and Senate have both passed different versions but failed to make a compromise. Democrats generally want expansive rights to sue in federal and state courts with few limits on the amount of damages that can be awarded. Republicans, on the other hand, want to limit lawsuits to certain courts and to limit the damages that can be awarded; they say that such lawsuits will hurt other enrollees by forcing costs up. Other sticking points include whether patients should be required to exhaust rights to administrative appeals and whether employers should be liable if they participate in medical decisions. While Congress has stalled, patients' rights have moved further in some states. About a fifth of the states now have laws explicitly authorizing suits by enrollees against their managed care organizations, with Texas the first in 1997 (other states include Arizona, California, Georgia, Maine, New Jersey, Oklahoma, Washington and West Virginia). Most states also now have "external review" systems under which people enrolled in a managed-care program can appeal a denial of coverage on medical-necessity and other grounds to a state agency or a state-certified body. Such state measures vary in strength and may be invalidated by a federal patients-rights bill. All of this debate stems from the changes in the American private health-insurance market since the 1980s. Healthcare costs and private-insurance premiums skyrocketed in the 1980s, and managed-care plans emerged as ways to hold health care providers such as hospitals and doctors more accountable for quality and cost. Health maintenance organizations, one prominent type of managed-care plan, cut costs by requiring members to deal with a pre-selected network of doctors and hospitals and by reducing the frequency of surgeries, hospital stays, and expensive medications. This helped keep healthcare affordable and within the reach of many people, but also limited the kinds of care one could get and led to the decisions that patients now want to sue over. About 80 million Americans are covered by a HMO plan. Another 100 million Americans are covered by preferred-provider organizations (PPOs), another form of managed-care plan whereby groups of medical providers that contract directly with employers or health-insurance carriers to provide services to enrollees. With general agreement that patients should be able to take their MCOs to court, Congress has still failed several times in recent years to reach agreement on just how to enforce these rights. The House and Senate passed conflicting bills in 1999 and 2000 but could not iron out major policy differences. The same may happen again this year. In June 2001, the Senate passed by 59-36 a bill sponsored by Senators Edward Kennedy (D-Mass.) and John McCain (R-Airz.) that would allow patients to sue MCOs in state court and also in federal court if the MCO did not exercise "ordinary care" in making its decisions. If successful, patients could win up to $5 million in the equivalent of punitive damages and would have compensatory damages limited only by state law. The bill would also make employers potentially liable if they directly participate in medical decisions that harm patients. President George W. Bush said he would veto a final bill that looked like the Senate bill. Two months later, in August 2001, the House passed a bill supported by Representative Charles Norwood (R-Ga.) by 225-203; this bill would allow patients to sue MCOs in state court and would limit damages for pain and suffering as well as punitive damages to $1.5 million each, with no limit for economic damages such as lost earning potential. Now the House and Senate must make a compromise version of the bill or see federal patients' rights stall for a third year in a row. Sources: Bryan A. Liang, Health Law and Policy: A survival guide to medicolegal issues for practitioners (Butterworth-Heinemann, 2000). Uwe Reinhardt, The Managed-Care Industry in Perspective, available on-line here. The Kaiser Foundation. Health Care Coverage (last updated July 27, 2002) (back to top) About 16.5 percent of the U.S. population under 65 years of age, roughly 39.2 million people, had no health insurance coverage in 1998. Two-thirds of the population had private health coverage through their workplace, and about 8.8 percent had health coverage through Medicaid.  Cancer Research (last updated January 24, 2002) (back to top) Three decades ago, President Richard Nixon committed the resources of the federal government to curing cancer. "The time has come in America when the same kind of concentrated effort that split the atom and took man to the moon should be turned toward curing this dread disease. Let us make a total national commitment to achieve this goal," Nixon said in his State of the Union message on January 22, 1971. "America has long been the wealthiest nation in the world. Now it is time we became the healthiest nation in the world." At the time, an estimated $220-50 million was spent on cancer research each year. Nixon proposed in his State of the Union message to add $100 million in funding and then "whatever additional funds can effectively be used." Nixon then signed into law the Cancer Act of 1971, which authorized $1.6 billion over the next three years for research ($400 million in FY 1972, $500 million in FY 1973, and $600 million in FY 1974). It also established the National Cancer Institute as a new federal agency within the National Institutes of Health but with its own budget which it would send directly to the president for approval. "I hope that in the years ahead that we look back on this as being the most significant action taken during this Administration," Nixon said in a rare public signing ceremony on December 23, 1971. Three decades later, research into curing and treating cancer continues. In fact, from 1973 to 1990, there was a gradual increase in cancer incidence and mortality rates of about 1-2 percent a year. The mortality rate then peaked in 1990 with 216 deaths for every 100,000 people that year, and has gradually declined each year to 202.4 deaths for every 100,000 people in 1998. The incidence rate peaked in 1992 with 418.5 new cases for every 100,000 people that year, and has gradually declined to 384.5 new cases in 1998. Today, cancer is credited as the cause of almost one in four deaths in the United States, and is second only to heart disease in the number of deaths it causes each year. Still, scientists generally credit the federal government's efforts with helping to develop a better understanding of cancer and to address some forms of the disease, but say that the federal government did not commit the same kind of resources and efforts that it did for efforts such as getting to the moon or developing nuclear weapons. "Unfortunately, only limited research funding trickled out, and we supported only a small skirmish. This was not an American style effort to go to the moon, to crack the atom or to fight a Gulf War. The effort could only support a few thousand investigators to fight only a limited engagement," said Donald S. Coffey from Johns Hopkins Oncology Center, then the vice-president of American Association for Cancer Research, in testimony before Congress in 1998. "Still, six cancers were essentially cured, including those primarily affecting young people, such as leukemia and testicular cancer." "The situation in 1971 was unlike the one in 1961 when the problem was getting to the moon, not curing cancer. In 1961, we knew how to get to the moon. The problem and its solutions were defined 8 years later, and many billions of dollars later man walked on the surface of the moon," said Dr. Leonard A. Zwelling of Houston's M.D. Anderson Hospital, who also testified before Congress in 1998. "The cancer problem was and continues to be different. In 1971, we did not know what cancer was. The problem was not defined, so the solution surely wasn't either." Still the only federal agency specifically devoted to cancer, the National Cancer Institute received $2.9 billion in funding in FY 1999 and $3.3 billion in FY 2000 for research in different categories involving specific cancer sites, cancer types, related diseases, and research mechanisms. Of the FY 2000 funding, 13 percent went for breast cancer research, 7 percent for AIDS, 6 percent for prostate cancer, and 5 percent each for lung and colorectal cancer. According to testimony before Congress, cancer research is now pursuing some promising directions, such as:
Suicide (last updated October 12, 2002) (back to top) More people die in the United States by suicide than by homicide each year, with about 30,000 deaths per year and about 500,000 people requiring emergency medical treatment from an attempted suicide. The overall suicide rate in the United States has held at about 11-12 suicides per 100,000 people, but varied among specific groups; the rate among young people has almost tripled in recent decades while other groups have seen either stable rates or declines. Public officials have been pointing more attention to the problem of suicide in the United States and around the world in recent years. In the United States, Surgeon General David Satcher called in 1999 for greater awareness and intervention, and a national strategy to improve suicide prevention was launched in 2001. These efforts have sought greater recognition of suicide as a preventable public health problem and reduced access to lethal means of self-harm. Another topic of concern has been improving the ways in which suicide is portrayed and discussed, particularly in the news media. Many experts have warned about the risk of "cluster suicides" or "suicide contagion," in which the number of suicides has increased when the number of stories about individual suicides increases, when a particular death is reported in detail, or when headlines are particularly dramatic. Accordingly, some have urged the media to avoid reporting a suicide in such a way that readers and viewers either identify with victims or see suicide as an acceptable solution or a way of getting attention, to not report detailed methods of committing suicide, and to avoid oversimplifying the reasons behind a suicide such as tying them to any one particular factor such as a traumatic event, a particular time of year, or identification with a celebrity. Nationally, there were 11.3 suicides per 100,000 people in 1998. While women are more likely to attempt committing suicide, men are about four times more likely than women to die by suicide. Native American men (including both American Indian and Alaskan natives) face the highest rates of suicide; in 1999, there were about 41.8 suicide per 100,000 Native American men, almost four times the national rate. About 3 out of five suicides are committed with a firearm. The following chart breaks down the death rates by suicide among men and women in different age groups, comparing the rates in 1950 and in 1998. Data is taken from the National Center for Health Statistics' Health, United States, 2001 report.
Smallpox (last updated October 7, 2002) (back to top) Smallpox is a viral disease that reshaped the course of world history by decimating populations in the Roman Empire, 17th-century Europe, and the early Americas. The last known case in the United States was in 1949, and it was officially declared eradicated in 1980 after a worldwide vaccination campaign, but two known stocks of the virus still exist and many fear that some governments and/or terrorist organizations are secretly developing the use of smallpox as a biological weapon. In the wake of the September 11, 2001 attacks, the Bush administration has taken steps to build up the federal government's stockpiles of smallpox vaccine, the only known way to prevent smallpox infection, so that about 20 million people could be immunized in the event of a smallpox emergency. Heads of the Centers for Disease Control, which has been formulating draft response plans, recommended in early October 2002 inoculating civilians in advance of such an emergency, but whether the federal government will embark on such a plan is still not decided. The last known case of smallpox was in the late 1970s, and the World Health Assembly officially declared the eradication of the disease in 1980. Since then, the world's stocks of smallpox vaccine have dwindled, and in 1999 the United States had only enough stocks to immunize about 7 million people. Smallpox spreads quickly through inhalation and goes undetected for several days, so the virus could spread quickly through unvaccinated, densely packed urban populations. Infected persons develop rashes which develop into scabs and pitted scars, and about 10 percent die within a week. In the late 1990s, international health experts in the World Health Assembly debated whether it should destroy the last two known stocks of smallpox virus. In 1996, the members agreed to destroy the stocks by June 30, 1999, but agreed in May 1999 to delay that destruction for at least three more years so that more research could be done. The main arguments for destroying smallpox were to eliminate the risk of the virus escaping, since an increasing proportion of the global population has not been immunized; proponents of smallpox's destruction also say that enough of the virus has been cloned and its DNA studied to allow further research even if the actual virus no longer exists. On the other hand, those who opposed destruction said that more research needs to be done first and that secret stocks may exist, probably as biological weapons. There is evidence for this viewpoint: laboratories in the former Soviet Union reportedly maintained secret stocks of smallpox virus in the Cold War and developed the virus as a biological weapon, and other countries have tried developing similar biological weapons and may have stocks of smallpox as well. The only two legal stocks of smallpox virus then in existence were held at the Centers for Disease Control and Prevention (CDC) in the United States and at the Russian State Centre for Research on Virology and Biotechnology (VECTOR) in the Russian Federation. Sources: The Centers for Disease Control is on-line and has information on smallpox collected here. The World Health Organization is on-line here; look for press releases in 1999. D.A. Henderson, Smallpox: clinical and epidemiologic features, Emerging Infectious Diseases, Vol. 5, No. 4 (July-August 1999, special issue). Nicolau Barquet and Pere Domingo, Smallpox: the triumph over the most terrible of the ministers of death, Annals of Internal Medicine, October 15, 1997 (127:635-642), available on-line here. Mad Cow Disease (last updated January 18, 2004) (back to top) The first U.S. case of mad cow disease, technically known as bovine spongiform encephalopathy (BSE), was diagnosed and confirmed in late December 2003. Since then, the government has tried to trace the cow back and to strengthen protection against further cases, and more than 30 countries have banned the importation of various beef products from the United States. SARS (last updated May 4, 2003) (back to top) A previously unknown respiratory illness known as severe acute respiratory syndrome (SARS) was first recognized in late 2002 and about 6,200 cases had been reported as of early May 2003; cases have been reported primarily in China but some have also been reported in almost 30 countries in Asia, North America and Europe. There have been 435 deaths worldwide attributed to SARS, with the vast majority in China, 22 in Canada, and none in the United States, according to reports by the Centers for Disease Control and the World Health Organization. There were 56 probable cases and 233 suspect cases of SARS reported in the United States as of early May 2003, according to a CDC report dated May 2, 2003. Of the 56 probable cases, 37 were hospitalized and two required mechanical ventilation. Nearly all of the patients had traveled to China, Hong Kong, Singapore, Hanoi or Toronto; one was a health-care worker who had treated a SARS patient, and one was a household contact of a SARS patient. About half of the probable cases and a fifth of the suspect cases were reported in California; New York reported nearly a tenth of the probable and the suspect cases. SARS appears to spread through close person-to-person contact, and the CDC reported in an April 30, 2003 fact sheet that "most cases of SARS have involved people who cared for or lived with someone with SARS, or had direct contact with infectious material … from a person who has SARS." In order to contain the spread of SARS, the CDC has advised travel advisories recommending that people consider postponing nonessential trips to China, Hong Kong, Taiwan or Singapore until further notice. The CDC has also issued travel alerts for Hanoi, Vietnam and for Toronto, Canada; travel alerts indicate health concerns about a given area but do not necessarily recommend postponing a trip. Initial SARS symptoms include a fever along with a headache, discomfort, body aches, or mild respiratory symptoms. Within a week, SARS patients may develop a dry cough that could prevent enough oxygen from getting to a person's blood; about 10-20 percent of patients may require mechanical ventilation. Scientists as of early May 2003 reported that a previously unrecognized coronavirus was the leading candidate for the cause of SARS. Sources: The Centers for Disease Control has information about SARS on-line here, including a May 2, 2003 surveillance report on-line here. The World Health Organization has information about SARS on-line here, including a definition as of May 1 here and a summary of worldwide cases here. Fertility and Age (last updated May 19, 2002) (back to top) At least 20 percent of women now wait to have their first child until after age 35, according to the American Society for Reproductive Medicine. The median age for a woman having her first child has gradually gone up over recent decades and was 24.3 in 1998, compared to 22.0 in 1972. Birth rates for women aged 30 have risen since the early 1980s. In 1998, women aged 30-34 had a birth rate of 87.4 births per 1,000 women, women aged 35-39 had a birth rate of 37.4, and women aged 40-44 had a birth rate of 7.3. About three-quarters of the births in 1998 were to mothers aged 15-29; 15.8 percent of the births that year were to mothers aged 30-34 and 5.9 percent were to mothers aged 35-39.   Human Experimentation and Informed Consent (last updated August 31, 2002) (back to top) Informed consent has been the guiding principle behind ethical medical research involving human subjects for several decades, and in some ways even predates the Nuremberg Code that arose from the 1947 trial of Nazi German doctors. However, while the principle is now firmly rooted in federally-funded and federally-conducted research, it spread slowly and unevenly during the second half of the 20th century among various branches of the United States government and medical community, and it has not always been followed fully. In the 1940s and 1950s, in particular, branches of the United States government generally did not adhere to the Nuremberg Code's principles as they conducted a wide range of experiments to test radiation's effect on humans and to test the effectiveness of LSD as a mind-controlling substance. These efforts affected a wide range of citizens, including hospital patients, children considered retarded, and prisoners, and some did not come to light for years. Probably the most infamous example of medical experimentation in the United States was the syphilis study conducted in Tuskegee, Alabama. In the study, about 400 black men with syphilis went untreated for four decades so that the United States Public Health Service could see how syphilis progressed in blacks. The study began in 1932, when there was no widely accepted treatment for syphilis and when medical ethics were not of widespread concern, but continued without change for four decades, despite developments in the 1950s that saw both the widespread use of penicillin to treat syphilis and general acceptance of the Nuremberg code. The study was finally brought to light in 1972 and then terminated. The participants, who did not know they had syphilis and had previously thought themselves lucky to be in the study, received settlements in 1975 of about $37,500 each. Additionally, President Bill Clinton apologized in 1997 for the experiment. As a result of such controversies, the informed-consent principles behind the Nuremberg Code became more widespread in the 1970s. Today, all federally-funded researchers abide by the Common Rule, which requires informed consent in all research that could expose human subjects to any physical, social or psychological risks, and the creation of institutional review boards (IRBs) empowered to disapprove and stop any improper research. Additionally, pharmaceutical and medical companies are required to seek informed consent when conducting clinical trials. Prisoners were used widely in the 1940s through the 1970s, but such research largely has stopped due to federal rules and a shifting climate; participation was actually considered a privilege and was thus limited mostly to white men before the civil-rights movement, and prisoners actually tried suing to stop the federal rules designed to end the use of prisoners in tests. Now, companies use financial incentives to get students and poor people to participate. There are a few exceptions to the informed consent requirement, at least under the Food and Drug Administration's guidelines for clinical trials. According to the first exception, a test device or drug can be used one time in emergency situations (1) where the human subject is in a life-threatening situation, (2) when getting informed consent from the subject is impossible, (3) when there is not enough time to obtain the consent from the subject's legal representative, and (4) when no alternative method is available that provides as good a chance of saving the subject's life. The FDA made this exception in the mid-1990s, sparking some criticism that the FDA was backing away from the informed consent principle. Second, under 10 U.S.C. 1107(f), the President of the United States can also waive informed consent requirement when a new drug is given to a member of the armed forces in connection with a particular military option. The president must determine that getting the subject's consent is not feasible, is not in the subject's best interest, or is not in the interest of national security.
Male Circumcision (last updated September 2, 2002) (back to top) About two-thirds of newborn male infants in the United States (about 1.2 million boys) are circumcised each year, according to the National Center for Health Statistics, making it one of the most common medical procedures in the country. Male circumcision is rooted in the Jewish and Muslim faiths, but the medical benefits of such a procedure are open to debate. In 1999, the American Academy of Pediatrics said that while there were some potential medical benefits associated with circumcision, they were not enough to justify the procedure on medical grounds. As a procedure, male circumcision involves the removal of the foreskin, a layer of skin that covers the glans, or the rounded end of the penis. Before birth, the foreskin and glans develop as one tissue and are fully attached, but separation occurs during the first years after birth as skill cells are shed, and then the foreskin is retractable. The percentage of newborn male infants who are circumcised varies in the United States by region and by other demographic factors. It is most common in the Midwest (about 80 percent), and least common in the Western United States (about 40 percent). It is uncommon in Asia, South America, Central America and most of Europe.
Female Genital Mutilation, or Female Circumcision (last updated August 17, 2002) (back to top) More than 100 million women in some African and Asian countries have been subjected to a procedure known as female genital mutilation, or female circumcision, in which part or all of each woman's clitoris and/or labia minora are removed. In one form of FGM, the woman's clitoris and labia minora are entirely removed, and the labia majora are scarred and then stitched together to leave a small opening only for bodily discharges. The practice has been condemned by international organizations such as the World Health Organization, the United Nations Children's Fund, and the UN's programs for women, and groups are working to improve women's rights and eliminate the practice. African and Asian countries where the practice is common have struggled with the issue. Top-down change, such as 1996 ministerial regulations that banned the procedure in Egypt and that was subsequently struck down by a judge, has had some success, but groups have also reported more lasting success through education and through an overall improvement of women's rights. The issue first came up in the United States when Fauziya Kassindja, a 17-year-old Muslim woman from Togo, sought asylum on the basis of her fear that she would be subjected to female circumcision if she was returned to her home country. Her claim was initially denied as not one of the narrow grounds for asylum, but was later granted in June 1996 by the Board of Immigration Appeals, which then established fear of female genital mutilation as legitimate grounds for granting asylum. The United States subsequently established criminal penalties for performing the procedure on women under 18 years old, although the procedure is not common in the United States. There are several types of FGM, depending on how much of the clitoris and/or labia are excised or cut. The most common type of FGM is Type II (excision), and the most extreme is Type III (infibulation).
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