Bioethics consists of obligations of a moral nature relating to biological research and its applications. It is a branch of applied ethics arising from technological and scientific developments (e.g. tissue engineering, assisted reproduction techniques, life support techniques, ...)
Defensive bioethics looks for limits to tutelate
In 1994, a large survey was undertaken to assess the mental health of UK hospital consultantsref. A 27% prevalence of psychiatric morbidity was reported among 882 respondents from 5 specialties: gastroenterology, radiology, surgical oncology, clinical oncology, and medical oncology. This prevalence was in line with findings for consultants reported by others around the same timeref and was markedly higher than the 18% reported in the employed general population. The situation was re-assessed in 2002 for 2 main reasons. First, much has changed in the National Health Service (NHS). Additional funding for health care has been committed and the workforce has expanded. However, patients' expectations regarding their care have risen and clinicians face new pressures, which include: implementation of new policies to drive service improvement, including the NHS Plan and associated national service frameworks; introduction of targets; formal procedures for consultant appraisal; and changes to employment contracts and clinical governance. Second, poor mental health is not only destructive to consultants and their families, but could also compromise the quality of the care provided to patientsref1, ref2. The mental health of consultants was re-assessed after an 8-year period in those not retired from the initial study cohort and in a new cohort, from the same 5 specialties, of consultants who were new to the grade since 1994. This approach enabled to assess changes in the mental health of comparable cohorts of consultants across time and included a group of consultants who responded at both time points. High job stress is associated with poor mental health in hospital consultants, whereas high levels of job satisfaction protect consultants' mental health against the harmful effects of job stressref. At both time points, psychiatric morbidity was estimated with the 12-item General Health Questionnaire (GHQ-12); emotional exhaustion, the principal component of burnout, was assessed with the Maslach Burnout Inventory, and job stress and satisfaction were measured with a study-specific questionnaireref consisting of 25 individual sources of job stress and 17 of job satisfaction rated on a scale of 0 to 3. The characteristics of the respondents were similar at the 2 times, except for increases in the proportion of women (from 12% to 19%) and full-time workers (from 85% to 89%) and a decrease in the proportion undertaking private work (from 68% to 60%). Since 1994, the estimated prevalence of psychiatric morbidity and the level of emotional exhaustion had risen. Consultants reported an increase in their levels of job stress, and a smaller increase in job satisfaction. Similar patterns of change over time in mental health, job stress, and job satisfaction were noted in the longitudinal cohort. Significant increases in psychiatric morbidity and emotional exhaustion were noted for both clinical and surgical oncologists, but not for the 3 other specialties. However, the variation in change in psychiatric morbidity between specialties was not significant. Change over time in the job and demographic profile of the consultant sample accounted for little of the increase in psychiatric morbidity or emotional exhaustion, according to multivariate analyses. For emotional exhaustion, changes over time differed across the specialist groups; the greatest increase was for clinical oncologists. Analyses that included job stress and job satisfaction indicated that these variables accounted for the increase over time in both psychiatric morbidity and emotional exhaustion, and the differences between specialties in change to emotional exhaustion scores. Changes in levels of job stress and satisfaction over time varied according to a consultant's specialty. Clinical and surgical oncologists were the only specialists that reported increased job stress without a similar increase in job satisfaction. The change in levels of different sources of job stress and satisfaction indicated more specifically the areas of work that were perceived as problematic. Clinical and surgical oncologists reported increased job stress arising from feeling poorly managed and resourced, and from dealing with distressed, angry, and blaming relatives. Clinical oncologists also reported increased job stress from work overload and its effect on their home life and from having managerial responsibilities. These problems were coupled with increased job satisfaction from only one area of their work—their relationships with patients, relatives, and staff. Surgical oncologists reported a decrease in job stress arising from keeping their skills and knowledge up-to-date, but this change was coupled with reduced satisfaction from intellectual stimulation such as teaching and research. The deterioration in the mental health of UK consultants we report is cause for concern to the consultants themselves, to their families, and to the patients for whom they provide care. Of particular concern to the NHS is that this deterioration seems to be the consequence of increased stress at work, which is unmatched by a comparable increase in job satisfaction. The changes that have occurred in the NHS over the 8-year period aim to benefit patients, but appear to have a negative effect on the working lives of consultants. The decline in mental health was not uniform across the five specialties, and most of the change seemed to arise from problems for clinical and surgical oncologists. Interpretation of the findings for medical oncologists is more difficult, as they are a much smaller group, which might explain why similar patterns of change were not significant. The increases in job stress might be accounted for in part by the profile of the consultant work force expansion over the 8 years. In England, the numbers of medical oncologists and gastroenterologists more than doubled between 1994 and 2002, increasing by 147% and 119% respectively, compared with only a 45% increase in number of surgeons and a 33% increase in the number of radiologists and clinical oncologists. Additionally, the reconfiguration of cancer services driven by the Calman Hine Report (1995) and NHS Cancer Plan (2000), while benefiting patients, might contribute to increased job stress without similar, and thereby protective, increased job satisfaction for clinical oncologists and surgical oncologists. Approaches designed to reduce consultants' workload and enhance their job satisfaction should be prioritised to protect this valuable and expensive component of the NHSref.
The protection and use of confidential information about patients has
had welcome priority in the government's thinking in recent yearsref1,
ref2,
ref3
and becomes more important with the planned introduction of the new NHS
care records serviceref.
The legal framework for the processing and use of personal information
is set out in the Data Protection Act 1998, which makes provision for the
protection of privacy and confidentiality of people's personal informationref.
At the other end of the privacy spectrum, openness and accountability in
the NHS have been given a boost with the implementation in January 2005
of the Freedom of Information Act 2000ref.
Many members of the public and healthcare professionals are unclear about
the details—perhaps even the existence—of both laws and what they mean
in practice. The Freedom of Information Acts (Scotland's was passed in
2002) give people a general right of access to information held by or on
behalf of public bodies, which include NHS trusts, primary care trusts,
strategic and special health authorities, and others—general practitioners,
dentists, opticians, and pharmacists—providing services under parts II
or 28C of the NHS Act 1977. The act creates an obligation on these bodies
to have a publication scheme showing what information they publish and
how it can be obtained. They have to reply to a request under the act for
specific information, saying whether that information is held and making
it available—subject to some exemptions. Individuals seeking information
about different aspects of their healthcare will draw on the provisions
of both acts depending on the nature of the request. For example, a patient's
request to see his or her own health record is not covered by the Freedom
of Information Act. Section 40 specifically exempts personal information
of the person making the request within the meaning of the Data Protection
Act 1998. Even if the request is received as a request under the Freedom
of Information Act, public bodies are obliged to treat it as one made under
the provisions of the Data Protection Act, which gives people the right
of access to their own electronic and paper based health records, subject
in most instances to a prescribed fee. Patients do not have an automatic
right to see everything—data controllers (the holders of the record) should
not reveal confidential information about a third party without that person's
consent; and they do not have to reveal information that they judge would
be harmful to the patient. But in addition to personal information, patients
and members of the public have a legitimate right to know more about the
activities of arranging and providing NHS services. They can now make a
request under the Freedom of Information Act about how decisions were made,
for instance on service allocation, overall prescribing patterns, or major
capital expenditure. The act is fully retrospective, so people can request
information about events at any time in the past. Not all such information
will be open to scrutiny. We do not know as yet whether the many exemptions
in the Freedom of Information Act will serve as reasonable grounds for
restricting access to information or be used as excuses for avoiding the
openness the act is intended to achieve. In addition to personal data of
the individual making the request, specific exemptions (subject to a judgment
about public interest) include among others the likelihood of creating
an actionable breach of confidence around information provided by a third
party (section 41) and revealing of trade secrets, or prejudicing commercial
interests of any person or body (section 43). A request under the Freedom
of Information Act can also be refused if the cost of meeting it would
exceed the sums laid down in regulations or would cause unjustifiable workloadref.
The acts are symbolic of the need in modern societies to protect the privacy
and confidentiality of individuals and at the same time ensure appropriate
accountability of publicly funded services. At their best the acts should
promote improved communication and management of records. The more that
is published and the more easily and frequently patients have routine access
to information about their health care, the less likely they are to need
recourse to the law to get the information they seek. Examples exist across
the NHS of hospitals and practices routinely making information available
to patients. These include general practices that invite patients to look
at their own records or clinicians who routinely copy letters to patients,
according to the policy of the Department of Healthref.
Where healthcare professionals have developed such schemes, they and their
patients have been rewarded with improved consultations, better understanding
of treatment options, and the chance to correct mistakes in recordsref.
In time the national programme for information technology will open "Healthspace,"
in which patients will be able to look at their records at their own convenience.
This will be a major advance for patients and will go some way to creating
more meaningful partnerships between patients and clinicians. Many clinicians
and health managers are unused to providing information about their performance,
which is now open to scrutiny. Some may grudgingly seek to comply only
with the letter of the law, and in doing so they may miss the wider potential
of the acts to contribute to a patient centred NHS. Legislation on its
own cannot bring about a major change in culture. But it can act as a catalyst
for improved performance in many ways. At its best, freedom of information
should be a marker for openness and accountability in public services.
It complements provisions for data protection for improving people's access
to information about themselves, alongside the protection of their confidentiality
and privacy. Both acts should help maintain progress to an NHS built on
a "3-way partnership of respect, honesty and openness—between the NHS and
the public, professionals and patients, and professionals and professionalsref."ref
Doctors for Research Integrity
Social determinants of health inequalities
The gross inequalities in health that we see within and between countries
present a challenge to the world. That there should be a spread of life
expectancy of 48 years among countries and 20 years or more within countries
is not inevitable. A burgeoning volume of research identifies social factors
at the root of much of these inequalities in health. Social determinants
are relevant to communicable and non-communicable disease alike. Health
status, therefore, should be of concern to policy makers in every sector,
not solely those involved in health policy. As a response to this global
challenge, WHO is launching a Commission on Social Determinants of Health,
which will review the evidence, raise societal debate, and recommend policies
with the goal of improving health of the world's most vulnerable people.
A major thrust of the Commission is turning public-health knowledge into
political action. There are gross inequalities in health between countries.
Life expectancy at birth, to take one measure, ranges from 34 years in
Sierra Leone to 81.9 years in Japan. Within countries, too, there are large
inequalities--a 20-year gap in life expectancy between the most and least
advantaged populations in the USA, for example. One welcome response to
these health inequalities is to put more effort into the control of major
diseases that kill and to improve health systemsref.
A second belated response is to deal with poverty. This issue is the thrust
of the Millennium Development Goalsref1,
ref2.
These goals challenge the world community to tackle poverty in the world's
poorest countries. Included in these goals is reduction of child mortality,
the health outcome most sensitive to the effects of absolute material deprivation.
To reduce inequalities in health across the world there is need for a third
major thrust that is complementary to development of health systems and
relief of poverty: to take action on the social determinants of health.
Such action will include relief of poverty but it will have the broader
aim of improving the circumstances in which people live and work. It will,
therefore, address not only the major infectious diseases linked with poverty
of material conditions but also non-communicable diseases--both physical
and mental--and violent deaths that form the major burden of disease and
death in every region of the world outside Africa and add substantially
to the burden of communicable disease in sub-Saharan Africa. To understand
the social determinants of health, how they operate, and how they can be
changed to improve health and reduce health inequalities, WHO is setting
up an independent Commission on Social Determinants of Health, with the
mission to link knowledge with action (panel 1). Public policy--both national
and global--should change to take into account the evidence on social determinants
of health and interventions and policies that will address them.
The Commission on Social Determinants of Health
The Commission will not only review existing knowledge but also raise
societal debate and promote uptake of policies that will reduce inequalities
in health within and between countries. The Commission's aim is,
within 3 years, to set solid foundations for its vision: the societal relations
and factors that influence health and health systems will be visible, understood,
and recognised as important. On this basis, the opportunities for policy
and action and the costs of not acting on these social dimensions will
be widely known and debated. Success will be achieved if institutions working
in health at local, national, and global level will be using this knowledge
to set and implement relevant public policy affecting health. The Commission
will contribute to a long-term process of incorporating social determinants
of health into planning, policy and technical work at WHO.
This introduction to the Commission's task lays out the problems of
inequalities in health that the Commission will address and the approach
that it will take. This report will argue that health status should be
of concern to all policy makers, not merely those within the health sector.
If health of a population suffers it is an indicator that the set of social
arrangements needs to change. Simply, the Commission will seek to have
public policy based on a vision of the world where people matter and social
justice is paramount.
Inequalities in health between and within countries: poverty and inequality
A catastrophe on the scale of the Indian Ocean tsunami rightly focuses
attention on the susceptibility of poor and vulnerable populations to natural
disasters. It is no less important to keep on the agenda the more enduring
problem of inequalities in health among countries.
The involvement of doctors in torture and the abuse of prisoners' human rights has been well documented over the past few decades. It is therefore disturbing that the cultural and social factors that have seduced individual health professionals and their institutions into participating in abuse have persisted, and have therefore remained unchallenged. More gravely, both governmental and medical bodies have begun adjusting and blurring their ethical guidance, tilting themselves towards endorsement of gross ethical malpractice, thereby ensuring the continuation of doctors' involvement. In the middle of 2004, allegations of mistreatment by military personnel in the prison at Abu Ghraib, and in the detention centre at Guantanamo Bay, received worldwide headlines. Press reports (Slevin P, Stephens J. Detainees' medical files shared. Washington Post June 20 2004; A1; Lewis N. Interrogators cite doctors' aid at Guantanamo. New York Times June 24 2004; A1) about the passive or active involvement of doctors surfaced in June, 2004, followed by more authoritative documentation of the scale and type of abuseref1, ref2. These reports, later partly confirmed by an independent reportref to the US Government under the chairmanship of John Schlesinger, and a leaked report from the International Committee of the Red Cross, made it clear that medical personnel failed to report evidence of torture, failed to intervene to stop it being repeated, and made available to interrogators information from confidential medical files, thereby allowing interrogators to exploit weaknesses. There is speculation, but no evidence, that death certificates of those who died under torture have been falsified. A recent article (Lee BJ. The stain of torture. Washington Post July 1 2005) by the former physician to former President George H W Bush makes clear the repugnance felt by the wider USA medical community. The shock of these revelations is only slightly mitigated by the knowledge that these cases are likely to represent isolated, rather than endemic, patterns of behaviour by US military doctors. However, as history tells us, the lack of a consistent and robust response from bodies responsible for condemning poor ethical practice will ensure the persistence of such practices. If the global medical community is to take effective steps to reverse this corruption of ethics, we need to understand that this corruption is a disease, with a documented aetiology, and one that has so far defied treatment. It might seem insensitive and disproportionate to cite the Nazi doctors in comparison, but it is necessary to do so. The involvement of German doctors in the 1930s and 1940s remains an indelible stain on medical ethics; active “euthanasia” and experiments involving Jews, gypsies, and the mentally ill were done on a massive scale without apparent question or guilt. The work of Lifton (Lifton R. The Nazi doctors: the psychology of medical killing. Papermac 1986 LondonThe Nazi doctors: the psychology of medical killing. Papermac, London (1986)) has helped to explain how this desensitisation and deviation from a normal moral compass occurred. He identified several factors, including acceptance of a state ideology that created scapegoats for the ills of society, and what he called “doubling”, an ability to exist in two separate but functional halves. Others included fear of reprisal if refusing to participate, and a poor understanding of basic medical ethical principles. It is tempting to assume that this behaviour is rare, and it is, but only in scale. It has been repeated, to give but a few examples, in South Africa, Chile, Turkey, and the former USSR (British Medical Association. . In: Medicine betrayed, Zed Books, London (1992).67). In all these cases, the problem persisted and became more embedded as a result of failure by national medical associations to object. Turning to Guantanamo and Abu Ghraib, we see the same factors at work. In February, 2002, George W Bush (Humane treatment of al Qaeda and Taliban detainees. Memo from the President, Feb 7, 2002. Whitehouse, Washington DC (2002)), declared that Al Qaeda terrorists were no longer covered by the Geneva Convention. In August of the same year, a lengthy memorandum (Standards of conduct for interrogation under Sections 2340-2340A of title 18 of the United States code. Memorandum for Alberto R Gonzales, Counsel to the President, August 1, 2002. US Department of Justice, Washington DC (2002)) prepared by the US Justice Department for Alberto Gonzalez, then Counsel to the President, (and now the USA's Attorney General), redefined torture, stating that “for an act to constitute torture … it must inflict pain that is difficult to endure”. The memorandum continues: “Physical pain amounting to torture must be equivalent in intensity to the pain accompanying serious physical injury, such as organ failure, impairment of bodily function, or even death.” The absence of any substantial objection from US medical bodies brought into play the first of Lifton's conditions—the acceptance of a societal or political imperative. This failure to oppose put prisoners, already incarcerated without trial or access to legal representation, at the mercy of unprincipled doctors. How many doctors have bought into the prevailing ideology is not yet clear. Quite possibly relatively few. But the recurrence, over what is now a 70-year period, of actions that should exist only in history is evidence that the global medical community has failed to respond appropriately. This inertia is bad enough, but there is evidence of a more worrying trend—governments and professional bodies rewriting existing ethical guidance in the service of abuse. The use of psychological techniques to break prisoners' wills in interrogation has a long history (Physicians for Human Rights. Break them down—systematic use of psychological torture by US Forces. Physicians for Human Rights, Boston (2005)). Clearly, professional advice is needed so that such techniques can be applied effectively. That psychiatrists and psychologists have provided this advice is documentedref and admitted, but these are health professionals whose ethical codes require the highest standards. The problem is that published codes are strong in their application with the one-to-one relationship with patients, but weak when applied to communities, and therefore open to distortion and misrepresentation. For example, Dr David Tornberg, US Deputy Assistant Secretary of Defense for Health Affairs, stated that “physicians assigned to military intelligence have no doctor-patient relationship with detainees and, in the absence of life-threatening emergency, have no obligation to offer medical aid.”ref US Secretary of Defense for Health, William Winkenwerder, has acknowledged that several medical personnel working at Guantanamo are not providing direct care for patients, but are using their skills “to assist the interrogators”, in the role of “behavioural scientists” (Mayer J. The experiment. The New Yorker July 11 and 18 2005; 61-71). These personnel are not answerable to the Department of Defense, but to military intelligence, and work within Behavioural Science Consultation Teams, commonly known as “Biscuits”. In new guidance (Assistant Secretary of Defence (Health Affairs). Medical program principles and procedures for the protection and treatment of detainees in the custody of the Armed Forces of the United States. Assistant Secretary of Defence (Health Affairs), Washington DC (June 2005)) issued to the military, the Pentagon has subtly changed the wording of a 1982 United Nationsref resolution on the ethical duties of health professionals with respect to prisoners. At first glance, this document seems to provide more protection to prisoners, but when one realises that the guidance sets out ethical guidance only in the context of a “provider/patient treatment relationship” (my italics) and outlaws “interrogations not in accordance with applicable law”, confidence evaporates. Bush's memorandum has placed these suspects outside a protective legal framework, and the Pentagon's guidance allows professional expertise to be used in interrogation techniques. Professional bodies have also recently shown a tendency to blur the boundaries. The American Psychiatric Association's Statement on Psychiatric Practicesref at Guantanamo Bay is weak. Far worse is the recent report of the American Psychological Association's “Presidential Task Force” (Report on the American Psychological Association Presidential Task Force on psychological ethics and national security. American Psychological Association, Washington DC (June, 2005).). This report rehearses conventional ethical principles about care of individual patients, but then does an about-face when it comes to sanctioning input from psychologists and advice on techniques to be used in interrogation. In effect, it becomes acceptable for a health professional to dispense with any ethical responsibilities when their training and expertise is used outside a strictly therapeutic context. The use of such knowledge in creating techniques intended to damage the minds of people under interrogation, and to advise how these techniques can be refined, is grossly unethical, and the fact that a professional body can support such activity is a disgrace. In the face of this institutional support for abuse, what can be done? First, the assault, led by the USA and UK Governments on international bodies, such as the United Nations, should be reversed. The profession of medicine has its national and international bodies, and these should work better, not simply to set out ethical practice, but to call its constituent members to account. The upcoming meeting of the World Medical Association in October is a good place to start, with this topic on the agenda. Second, the lack of ethical knowledge identified by Lifton in pre-war Germany persists. This can only be corrected by a renewed effort to map out the ethical boundaries appropriate for doctors acting in areas of dual responsibilityref, at undergraduate and postgraduate level. The involvement of doctors in direct or indirect abuse of prisoners is not just a stain on medical ethics. By abandoning our principles, we add fuel to the fires of distrust and despair, and increase the risk to us all, as the recent outrages in London demonstrateref.
Conferences that welcome spouses aid research tooref
Living will, also called will to live, advance health directive, or advance health care directive, is a specific type of power of attorney or health care proxy or advance directive. It is a legal instrument that usually is witnessed or notarized. These documents state :
are never told of their illness, are denied treatment, and instead are
used as human guinea pigs in order to follow the progression and symptoms
of the disease. They all subsequently die from syphilis, their families
never told that they could have been treated.
over a span of 2 decades, the U.S. Public Health Service finally acts to
stem the disease. The director of the agency admits it had known for at
least 20 years that pellagra is caused by a niacin deficiency but failed
to act since most of the deaths occured within poverty-striken black populations.
in order to study the effects of new and experimental drugs to combat the
disease. Nazi doctors later on trial at Nuremberg cite this American study
to defend their own actions during the Holocaust.
Copyright © 2001-2005 Daniele Focosi.
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