The Ethics of Medical Research on Humans

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Traditionally, medical ethics has viewed the duty of confidentiality as a relatively non-negotiable tenet of medical practice. More recently, critics like Jacob Appel have argued for a more nuanced approach to the duty that acknowledges the need for flexibility in many cases. Confidentiality is an important issue in primary care ethics , where physicians care for many patients from the same family and community, and where third parties often request information from the considerable medical database typically gathered in primary health care.

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In increasing frequency, medical researchers are researching activities in online environments such as discussion boards and bulletin boards, and there is concern that the requirements of informed consent and privacy are not applied, although some guidelines do exist. One issue that has arisen, however, is the disclosure of information.

While researchers wish to quote from the original source in order to argue a point, this can have repercussions when the identity of the patient is not kept confidential. The quotations and other information about the site can be used to identify the patient, and researchers have reported cases where members of the site, bloggers and others have used this information as 'clues' in a game in an attempt to identify the site.

Healthcare institutions' websites have the responsibility to ensure that the private medical records of their online visitors are secure from being marketed and monetized into the hands of drug companies, occupation records, and insurance companies.

Ethical Codes & Research Standards

The delivery of diagnosis online leads patients to believe that doctors in some parts of the country are at the direct service of drug companies, finding diagnosis as convenient as what drug still has patent rights on it. With the expansion of internet healthcare platforms, online practitioner legitimacy and privacy accountability face unique challenges such as e-paparazzi, online information brokers, industrial spies, unlicensed information providers that work outside of traditional medical codes for profit.

The American Medical Association AMA states that medical websites have the responsibility to ensure the health care privacy of online visitors and protect patient records from being marketed and monetized into the hands of insurance companies, employers, and marketers. To ensure that appropriate ethical values are being applied within hospitals, effective hospital accreditation requires that ethical considerations are taken into account, for example with respect to physician integrity, conflict of interest , research ethics and organ transplantation ethics.

There is much documentation of the history and necessity of the Declaration of Helsinki. The first code of conduct for research including medical ethics was the Nuremberg Code.

A History of Ethics in Medical Research

This document had large ties to Nazi war crimes, as it was introduced in , so it didn't make much of a difference in terms of regulating practice. This issue called for the creation of the Declaration. There are some stark differences between the Nuremberg Code and the Declaration of Helsinki, including the way it is written. Nuremberg was written in a very concise manner, with a simple explanation.

The Declaration of Helsinki is written with a thorough explanation in mind and including many specific commentaries. Often, simple communication is not enough to resolve a conflict, and a hospital ethics committee must convene to decide a complex matter. These bodies are composed primarily of healthcare professionals, but may also include philosophers , lay people, and clergy โ€” indeed, in many parts of the world their presence is considered mandatory in order to provide balance. With respect to the expected composition of such bodies in the US, Europe and Australia, the following applies.

The REB should include people knowledgeable in the law and standards of practice and professional conduct.

Ethics and health

Special memberships are advocated for handicapped or disabled concerns, if required by the protocol under review. The European Forum for Good Clinical Practice EFGCP suggests that REBs include two practicing physicians who share experience in biomedical research and are independent from the institution where the research is conducted; one lay person; one lawyer; and one paramedical professional, e.

They recommend that a quorum include both sexes from a wide age range and reflect the cultural make-up of the local community. They suggest a chairperson be preferably someone not employed or otherwise connected with the institution. Members should include a person with knowledge and experience in professional care, counseling or treatment of humans; a minister of religion or equivalent, e.

Aboriginal elder; a layman; a laywoman; a lawyer and, in the case of a hospital-based ethics committee, a nurse. The assignment of philosophers or religious clerics will reflect the importance attached by the society to the basic values involved. Culture differences can create difficult medical ethics problems.

Some cultures have spiritual or magical theories about the origins and cause of disease, for example, and reconciling these beliefs with the tenets of Western medicine can be very difficult. As different cultures continue to intermingle and more cultures live alongside each other, the healthcare system, which tends to deal with important life events such as birth, death and suffering, increasingly experiences difficult dilemmas that can sometimes lead to cultural clashes and conflict.

Efforts to respond in a culturally sensitive manner go hand in hand with a need to distinguish limits to cultural tolerance. As more people from different cultural and religious backgrounds move to other countries, among these, the United States, it is becoming increasingly important to be culturally sensitive to all communities in order to provide the best health care for all people.

A common complaint patients have is feeling like they are not being heard, or perhaps, understood. Some believe most medical practitioners in the future will have to be or greatly benefit from being bilingual.

Ethics in human experimentation in science-based medicine โ€“ Science-Based Medicine

In addition to knowing the language, truly understanding culture is best for optimal care. Interpreting a patient's stories or day to day activities as opposed to standardizing and collecting patient data may help in acquiring a better sense of what each patient needs, individually, with respect to their illness. Without this background information, many physicians are unable to properly understand the cultural differences that may set two different patients apart, and thus, may diagnose or recommend treatments that are culturally insensitive or inappropriate. In short, patient narrative has the potential for uncovering patient information and preferences that may otherwise be overlooked.

In order to address the undeserved, uneducated communities in need of nutrition, housing, and healthcare disparities seen in much of the world today, some argue that we must fall back on ethical values in order to create a foundation to move towards a reasonable understanding, which encourages commitment and motivation to improve factors causing premature death as a goal in a global community.

One concern regarding the intersection of medical ethics and humanitarian medical aid is how medical assistance can be as harmful as it is helpful to the community being served. One such example being how political forces may control how foreign humanitarian aid can be utilized in the region it is meant to be provided in.

This would be congruous in situations where political strife could lead such aid being used in favor of one group over another. Another example of how foreign humanitarian aid can be misused in its intended community includes the possibility of dissonance forming between a foreign humanitarian aid group and the community being served.

Humanitarian practices in areas lacking optimum care can also pause other interesting and difficult ethical dilemmas in terms of beneficence and non-maleficence. Humanitarian practices are based upon providing better medical equipment and care for communities who's country does not provide adequate healthcare. On the other hand, wanting certain procedures done in a specific manner due to religious or cultural belief systems may also occur.

The ethical dilemma stems from differences in culture between communities helping those with medical disparities and the societies receiving aid. Women's rights, informed consent and education about health become controversial, as some treatments needed are against societal law, while some cultural traditions involve procedures against humanitarian efforts.

Human research ethics in the 19th century โ€“ risk and consent

The latter is controversial because certain communities have in the past outcast or killed HIV positive individuals. Leading causes of death in the United States and around the world are highly related to behavioral consequences over genetic or environmental factors. Buddhist ethics and medicine are based on religious teachings of compassion and understanding of suffering and cause and effect and the idea that there is no beginning or end to life, but that instead there are only rebirths in an endless cycle.

However, Buddhist teachings support living ones life to the fullest so that through all the suffering which encompasses a large part of what is life, there are no regrets. Buddhism accepts suffering as an inescapable experience, but values happiness and thus values life. However, attempts to rid oneself of any physical or mental pain and suffering are seen as good acts. On the other hand sedatives and drugs are thought to impair consciousness and awareness in the dying process, which is believed to be of great importance, as it is thought that one's dying consciousness remains and affects new life.

Because of this, analgesics must not be part of the dying process, in order for the dying person to be present entirely and pass on their consciousness wholesomely. This can pose significant conflicts during end of life care in Western medical practice. In traditional Chinese philosophy , human life is believed to be connected to nature, which is thought of as the foundation and encompassing force sustaining all of life's phases. Because many Chinese people believe that circulation of both physical and 'psychic energy' is important to stay health, procedures which require surgery as well as donations and trans-plantations of organs are seen as a loss of ch'i , resulting in the loss of someone's vital energy supporting their consciousness and purpose in their lives.

Furthermore, a person is never seen as a single unit but rather as a source of relationship, interconnected in a social web.

Ethical standards and procedures for research with human beings

Furthermore, some Chinese people may be inclined to continue futile treatment in order to extend life and allow for fulfillment of the practice of benevolence and humanity. Some believe Islamic medical ethics and framework remain poorly understood by many working in healthcare. It is important to recognize that for people of Islamic faith, Islam envelops and affects all aspects of life, not just medicine.

In addition to Chinese culture's emphasis on family as the basic unit of a community intertwined and forming a greater social construct, Islamic traditional medicine also places importance on the values of family and the well-being of a community. An example of this is requesting same gender providers in order to retain modesty.

Furthermore, Islam also brings forth the principles of jurisprudence, Islamic law and legal maxims, which also allow for Islam to adapt to an ever-changing medical ethics framework. Physicians should not allow a conflict of interest to influence medical judgment.