Opinion: House Approves Bill that Defies Basic Standards of Medical Ethics

by Michael S. Dauber

On May 4th, 2017, the Republicans in the U.S. House of Representatives voted to pass the American Health Care Act, an Act that, if enacted into law, would repeal and replace many central elements of the Affordable Care Act, commonly known as Obamacare. The measure has received widespread criticism from many Democrats and from professional medical associations such as the American Medical Association and the American Cancer Society. Many people have questioned various parameters of the bill. This article questions it from an ethical perspective, and in particular, the potential consequences of abandoning health care protections designed under Obamacare to ensure that the most vulnerable people in society receive the care that they need.

The American Health Care Act would strip away protections that have facilitated access to care for pregnant women, patients with disabilities, patients that cannot otherwise afford health care, and patients with pre-existing conditions. While any attempt to discriminate against the sick and needy is unjustifiably wrong, the Act appears to directly target members of groups that are defined as most vulnerable and in most need of protection under most formulations of ethical practice.

For example, the Act would allow states to opt out of Obamacare requirements that prohibit insurers from charging patients with pre-existing conditions higher premiums for health insurance. It further classifies pregnant women, women who have had C-sections, and victims of domestic violence and sexual assault as patients with pre-existing conditions. It also targets elderly patients by allowing insurers to charge elderly patients up to five times as much as members of younger age brackets. Currently, under Obamacare, insurers cannot charge the elderly more than three times the amount they charge younger patients. The Act also includes plans to gradually eliminate $880 billion in Medicaid funding over the next ten years, funds that could have otherwise been utilized to extend coverage to low-income families.

In short, the Act specifically targets some of the most vulnerable members of society who might suffer immensely without health care and who may not be able to afford to pay the costs that many insurers may demand, or may be unable to pay for other essential expenses after paying their insurance premiums. Ahead of the vote in the House of Representatives, Senator Bernie Sanders called the Act “an abomination” and, in a CNN interview with Anderson Cooper, Sanders said, “thousands of Americans would die because they would no longer have access to health care.” Proponents of the Act argue that it is engineered to reduce the burdens of health care cost on the government and on insurers. Yet, the overall effect will be a higher cost for patients. Many patients will suffer and will lose their access to care because of circumstances beyond their control.

In this regard, the Act conflicts with basic principles of contemporary bioethics.  For instance, the Belmont Report (1979), as a blueprint for ethics in human subject research, stresses the importance of respect for the “dignity of persons” while ensuring protections in accordance with justice. The Belmont Report, though focused on ethics in human subject research, has become a defining document in the history of medical ethics, establishing a system in which patients must be respected and special protections must be given to members of vulnerable populations. If a patient falls into a protected class, health care providers have an ethical obligation to ensure that the patient receives the care he or she needs and that the patient is not denied care solely on the basis of disability, economic status, or prejudice against specific medical conditions.

There is an apparent conceptual link between commitment to protecting vulnerable populations in the clinical and research context and commitment to ensuring that vulnerable populations have access to care. The American Health Care Act has not yet become law. It must first obtain approval in the Senate and be signed by the President. Most recently, the Senate decided to modify the bill before voting on it and, as a result, the bill must be sent back to the House for a second vote. As the Senate prepares its own version of the bill, government officials should recognize that a policy that effectively precludes access to health care for members of vulnerable populations is unethical by virtually every principle of medical ethics.

Heterologous Embryo Transfer Poses Novel Legal Questions

Heterologous Embryo Transfer (“HET”) occurs when a woman, unable to conceive a child, has a genetically unrelated embryo implanted. This form of surrogacy, which has been used for over 30 years, is now being complicated by the trend of embryo adoption.

There are often surplus embryos left over when a couple uses assisted reproductive technology, such as in vitro fertilization. In certain situations, the couple will allow the surplus embryos to be adopted by another couple. However, this raises novel legal questions if an issue of custody arises. There is neither legislation nor court precedent addressing what would happen if the biological parents sought custody from the second couple. As embryo adoption continues to increase, there will surely be legal battles over this.

From huffingtonpost.com, “Heterologous Embryo Transfer: A New Frontier in Parenting”

Excerpt from article:

Bringing a child into the world by traditional means is a process fraught with moral, ethical and emotional complications. Bringing a child into the world by non-traditional means, such as heterologous embryo transfer (HET) increases the complications exponentially, begging questions such as what defines a parent (genes, love, pregnancy and delivery, etc…) and who does the child belong to?

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Tags: Bioethics, pregnancy, parenting

Opioid Epidemic: Lawmakers Seek Answers from Manufacturers

In a response to the growing opioid epidemic, the Senate will question five of the biggest opioid drug manufactures.  The Senate is looking for reports regarding marketing practices that may have underplayed the seriousness of opioid addiction.  Some of the allegations include misrepresentation about addictiveness of certain drugs.

From CNBC, “Opioid epidemic: Senate committee opens probe of five big painkiller makers:

Excerpt from the Article: “The investigation will explore whether pharmaceutical manufacturers — at the head of the opioids pipeline — have contributed to opioid over-utilization and over-prescription as overdose deaths in the last 15 years have approached nearly 200,000,” said a press release announcing the probe.

 

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An Increasing Demand For The Right-To-Try

In recent years, thirty-three U.S. states have passed “right-to-try” laws aimed at increasing access to experimental treatments for terminally ill patients. Many such patients feel it is their right to try experimental medications, which have not been fully approved by the Food and Drug Administration (“FDA”) and are otherwise unavailable. On the other hand, some doctors and medical ethicists stand firm in their belief that FDA procedures and clinical trial processes should be adhered to as they were put in place for good reason – to ensure that drug manufacturers are producing a safe product. Furthermore, some argue that “right-to-try” laws do not expand patients’ access to effective drugs since pharmaceutical companies are not obligated to distribute experimental medications.

Excerpt from Article:

Right-to-try laws offer patients an alternative to the compassionate-use, or expanded-access, program the FDA has had in place for more than two decades. As many as 1,821 applications are filed each year, and about 99 percent of them are approved, according to the [FDA].

 

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Use of Social Media to Recruit Participants in Clinical Trials Raises Ethical Concerns

Difficulties faced by researchers in recruiting participants to clinical trials has resulted in the increased use of social media as a research tool. Although recruitment through social media is akin to traditional methods in many aspects, online recruiting raises several additional ethical and regulatory issues, such as privacy concerns and online security risks. However, little guidance has been provided to investigators and Institutional Review Boards to facilitate the review and use of social media as a recruitment mechanism. In light of the many benefits this form of recruitment has to offer to increasing participation in clinical trials, Harvard scholars published an article in the American Journal of Bioethics, offering practical recommendations to assist investigators and Intuitional Review Boards with the implementation of explicit policies for social media recruitment.

Excerpt from Article:

One issue that is specific to the online platform in regards to transparency is whether investigators are required to let people know that they are collecting data. Depending on the nature of the research study, investigators could reasonably obtain information just by “lurking” on the group page. 

 

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Making Health Insurance More Portable: GOP’s Plans for Insurance

In an article dated February 28, 2017, the author discussed a GOP plan to make health insurance more portable by allowing consumers to take their plans with them if they move, retire, or change jobs.  Although a popular idea for many, it does present some structural concerns due to the  setup of insurance markets and networks.

From NPR, “What If You Could Take It With You? Health Insurance, That Is”

Except from the article:

“To be truly portable, consumers must be offered plans regardless of their health status, age or other considerations. Before the health law was enacted, insurers could reject people with medical conditions. But the ACA prohibits insurers from redlining sick people or charging them higher premiums. Although popular in opinion polls, those Obamacare provisions may face some changes under the GOP plans.”

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New Genetic Testing Bill: Potential for Progress or Potential for Discrimination?

According to a recent article published in The Atlantic, the House Committee on Education and the Workforce recently approved H.R. 1313, a bill that would allow employers to pressure their employees to undergo genetic testing and share the results as part of an employer’s “workplace wellness program.” If an employee opts not to share the results, he or she could be forced to pay significantly more for health insurance.

Proponents of the bill note that it simply builds on programs already in place from the Affordable Care Act; however, critics are worried that the bill will take away many of the privacy, discrimination and insurance protections of the Genetic Information Non-Discrimination Act (“GINA”).

From The Atlantic, “The GOP’s New Bill Would Seriously Disrupt Genetics Research”

Excerpt from article:

“‘People are already being discriminated genetically without mandatory genetic testing—that’s what sexism and racism is . . . . This [bill] would result in a higher resolution of discrimination and more individualized ways of targeting people.’ The dark mirror of personalized medicine is personalized discrimination.”

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When Defenders Bring Disease: The U.N. Cannot Cure Cholera Crisis After Causing the Epidemic

For more than six years, Haiti has been fighting a Cholera epidemic caused when Nepalese U.N. peacekeepers leaked waste into the water supply. In December, the former U.N. secretary general, Ban Ki-moon, apologized to the country and promised $400 million to help fight the epidemic. However, only a small portion of the goal ($2 million) was raised, with only six of the 193 U.N. members contributing funds. Several countries donated outside of the fund, but the money raised was far from the announced goal.

Experts speculate that the lack of funding may have been caused by competing concerns about other highly publicized emergency situations that required funding and U.N. resources. For instance, the Ebola outbreak in Africa seemed to be of higher interest to donors than the Cholera outbreak in Haiti. The damage from Cholera cannot be ignored, though, with 800,000 people in Haiti affected.

From The New York Times, “After Bringing Cholera to Haiti, U.N. Can’t Raise Money to Fight It”

Excerpt from article:

He finally acted after the organization’s independent investigator on extreme poverty and human rights, Philip Alston, said in a scathing report that the United Nations’ failure to take responsibility for the cholera crisis was “morally unconscionable, legally indefensible and politically self-defeating.”

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Must Doctors Comply with Unconventional Requests of Patients?

A growing interest in “transhumanism” has presented an ethical dilemma for doctors. Individuals, like the bioartist Stelarc, are seeking surgeons who will perform unconventional procedures such as surgically implanting an ear on a forearm. For various reasons, most doctors are unwilling to perform these procedures. However, bioethicist, Francesca Minerva, argues that doctors should comply with these requests as long as they are legal.  According to Minerva, it is not the responsibility of individual physicians, but the responsibility of the government to determine whether or not such procedures are beneficial to society.  She further explains that, until the government makes such determination by promulgating new laws and regulations, denying individuals the opportunity to “enhance” their bodies violates patient autonomy.

From Bioedge, “Is it ethical to refuse a patient surgery for body art?”

Excerpt from article:

‘According to the basic principle of respect for autonomy, patients are entitled to decide if undergoing a certain treatment is in their best interest. And what constitutes one’s best interest is, at least in large part, based on one’s own assessment.’ If a request is legal, an ethical doctor must comply.

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Researchers Restore Hearing in Deaf Mice by Inserting a Normal Copy of the Mutated Gene

Two recent publications in the Nature Biotechnology journal show that researchers were able to help deaf mice hear again after inserting a gene, Ush1c, into their ears. Initially, the mice were given Usher Syndrome type IC, which also causes deafness in humans. To combat the deafness this caused in the mice, the mice were then given a normal copy of the mutated gene. The mice, who were profoundly deaf, began to hear. This research has important implications for humans with hearing loss, in that approximately half of the cases of hearing loss in humans has a genetic component.

From wired.co.uk, “Biologists help deaf mice hear again by inserting healthy genes into their ears”

Excerpt from article:

“[T]he work – and the field in general – is trying to answer one big question: ‘Can you manipulate the system to cure things that are wrong?’”

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