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I am participating in a summer public health research internship and was required to take this training about ‘human subject protection’ in research before I begin my work.

We’ve spoken a lot throughout the class about ethics and human rights in research studies and I thought this could be interesting for anyone who wants to read what the actual protocols for ethics in human research studies are. It largely discusses informed consent, rights of children, prisoners, and other vulnerable populations, and a lot of other topics that came up this semester in Global Access to Medicine.

Anyone who wants to complete the training or just review some of the information it provides can sign up on

phrp.nihtraining.com/users/login.php

.    –Click on the Register Button
.    –Complete the Registration form with your email and personal information.  Institutional affiliation should be either college/university or medical school depending upon your primary current institution.  The state entered should be the state where your current (or immediate past) academic institution is located.  Click Create Account button when finished and you can begin the training.

Throughout various discussions in class about life-extending medications and the debate over the value of life-improving medications vs. life extending medications, I have come to realize that our society often tends to associate a longer life with better health. After all, the graphs we observed at the beginning of the year measured a country’s health by the average life span of its citizens.

http://ucatlas.ucsc.edu/spend.php

Countries that have very low life expectancies (under 70) clearly have significant barriers to proper healthcare and medicine, since with today’s technologies and advanced medications there are known ways to fight disease and issues that lead to early death.

But when considering life expectancy in developed countries with advanced medicine, I think it is important to discuss whether extending someone’s life when they are very sick is always the best option. Currently, it is legal for patients to sign a document that establishes whether they want to continue life-sustaining treatments such as respirators or artificial nutrition when they are no longer able to communicate. However, this becomes a lot more complex in situations where the patient has not signed their decision in writing, as the family must make this decision and there is not always an agreement on what is best for the patient.

There are other cases in which patients are not in a complete vegetative state, and so there is no legal precedent for that patient to request to be let go, but extending a patients’ life might indeed be leading to more pain and suffering than if they were allowed to die. Is it morally wrong for a patient to ask a doctor to hasten their death if it will alleviate physical suffering or psychological degradation?

Since wanting to die or live under certain conditions is a very personal choice, it is difficult to establish laws on this issue. Furthermore, different family members might disagree on what is best for the health of their loved ones, and in these cases, who should have the right to decide whether one should continue to live?

Most will agree that life and health are human rights, but the questions of what quality of life and standard of health vary across individuals and across the globe. When reading about this topic, I came across this website that brings up a lot of fundamental questions on this issue that relate to human rights:

Who decides when pain or suffering is “unbearable” enough to prefer death?

Is alleviating pain to a terminally ill patient through euthanasia considered murder? Or is the opposite, forcing them to live in suffering, considered torture?

Who decides whether a person who is suffering from extreme dementia is content or suffering?

If people do have a right to end their lives, should this only be due to physical pain or can mental suffering such as agony from inability to function properly also a valid enough reason?

Which family members should have more decision power in whether a loved one’s life should be artificially sustained?

These issues are further complicated by the fact that different cultures and religions have completely different views on life, death, medicine, and individual vs. family rights. Although this is primarily a moral question, this issue plays a fundamental role in healthcare costs and technology and medicine development.

Following our discussion in class about the rights of prisoners, I came across an article by Mary Carmichael that discusses many of the issues that were brought up  about treatment for drug addicts in jails.

The article discusses some of the key issues related to the rights of drug addicts, in which the question of treatment for addiction in jails goes beyond that of providing medical care, but on if drug users, considered criminals, should be subject to the same human rights as anyone else.

The article quotes Amy Nunn, a professor of medicine at Brown University, explaining that “In spite of all of the proven clinical and social and economic benefits of pharmacological treatment, people really have a moral opposition to it…They think if you’re providing people with treatment, you’re not addressing their addiction in an appropriate way. They think people who have addictions deserve what they get, and that the only way to treat addiction is abstinence, when nothing could be further from the truth.”

After researching extensively about this topic for my final paper, I have come to agree with Dr. Nunn that many people just cannot get away from the desire to blame the users for their addicted state, and this leads them to believe that they deserve to be punished for the weakness of their choices. When discussing their rights in jail, many people thus do not see the need to take significant steps in helping addicts recover, or let alone fund their treatment.

In contrast to Carmichael’s article about the necessity of treating addicts as patients in need, an article by Dr. Theodore Dalryample expresses the opposite view that we should not perceive addiction as an illness and that we should stop spending our money trying to treat it.

The author here claims that addiction is constructed as a disease but that it is in fact a moral problem, not a medical one. However, this article has a reoccurring fundamental flaw, in my opinion, which is often used to support the claim against viewing drug addicts as victims of their condition– It claims that the only reason addicts continuously engage in drug use is because of their fear of suffering the temporary physical withdrawal symptoms. This implies that addicts act cowardly and weak by not “toughing up” the consequences of drug-withdrawal in order to rid of their habit. This is an overly simplistic and naive way of looking at drug addiction, as anyone who has met a person with an addiction, ranging from heroin to even caffeine, knows that the psychological complexity of addiction goes way beyond the mere physical consequences of withdrawal. To me, this perspective undermines the importance of mental health as compared to  physical health, as it fails to recognize the necessity of treating physical, psychological, and mental conditions aspects of well-being equally. It also fails to acknowledge the complex environmental and social factors that play into addiction and the difficulty of recovering from it.

As long as people continue to blame addicts for their immoral actions of drug use, they will not consider them worthy of full human rights, and will not take steps to assure that their rights to health and dignity are provided. But referring again to rights of prisoners, even if drug-use was in fact immoral, criminal, and harmful to society–is it still right to deny people certain fundamental human rights?

 

Recently, I have been very involved in the issue of immigrant justice and bringing forward the stories of thousands of undocumented immigrants in this country who often do not have a say in discussions about human rights. We often speak about how in a first-world country like America, we have more access to medicine and other rights than in many other parts of the world; but for undocumented people this is not always the case. In discussions of healthcare coverage in this country, despite the well-known privatized system of medical care, it is always assumed that everyone has some right to be covered because if they cannot afford private insurance they are eligible for Medicaid. Yet undocumented immigrants are not.

At a recent panel about this issue, I heard a statement that disturbed me: A son of an immigrant mother had said that the first time his mother was eligible for Medicaid was when she was pregnant with him. Because she was holding the life of a future American citizen, she became eligible to receive the healthcare benefits that this country offers. Although this law does not surprise me, I am still struck by the distinction that is made between a human with American citizenship and a human without American citizenship, and how this status determines one’s right to basic healthcare. If health is a universal human right, how come a social security number, or lack there of, determines one’s access it?

With the enforcement of anti-immigrant legislation in 2010, Nebraska passed a law that prevented undocumented women from receiving prenatal services through Medicaid programs in an effort to prevent illegal immigrants from receiving public benefits. However, this notion contradicted Nebraska’s pro-life sentiment, which encouraged covering all prenatal costs of women for the benefit of the unborn child who would in-fact be born an American citizen. This led to a controversial discussion of the right of unborn children vs. born children to healthcare. So because the child would eventually be born American, there was already discussions over the unborn child’s right to health. However, there was no discourse over the mother’s right to health, simply because she was not American? Is she not human too?

So what makes a person eligible for the right to health? Is it where they are born? Is it what legal status they have? Do they even hold this right before they are born? When we discuss access to medicine on a global scale we see clear barriers in developing countries’ accessibility to medicines and health care that have to do with trade laws, pricing, lack of infrastructure, and other factors.  But the gaps in access to medicine within the US population arise from completely different barriers that prevent certain people from their right to health even when adequate medicine and care reside just around the corner.

I appropriately ran into this article after reading the Mann et al. paper on “Health and Human Rights,” which largely discusses discrimination against people with HIV and its direct infringement on the universal principles of human rights:

A South African journalist working for Al-Jazeera was recently dismissed from his job and then detained and deported from Qatar after he was found to be HIV-positive. The journalist is now attempting to take this case against Qatar to the International Labour Organization for violating international labor conventions. According to the 1958 Discrimination (Employment and Occupation) Convention, which Qatar has signed, states must enact legislation that prohibits employment discrimination on the basis of race, color, sex, nationality, or religious or political beliefs. Although this declaration does not refer directly to HIV-status discrimination, it can be interpreted to include it. This claim is now being argued by human rights advocates from the South African human rights organization Section 27, who has lobbied to press charges against Qatar and countries with similar discriminatory policies.

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