Mondays, Am I Right?

My first thought after reading the article by Rosanna Xia on DDT waste dumping in the Pacific Ocean?

This whole week has been one long case of the Mondays. Thus, the title of the post. Also, I have a midterm for another course this week as well as lots of other things piling up, so this post might not be as in-depth as some others.

This article discussed the massive amounts of DDT acid waste dumped by Montrose (leading DDT producer in the US from 1947-1982) into the Pacific Ocean, out by Catalina Island. When it was first researched, DDT was referenced as a "miracle chemical", but even when there wasn't enough research in living systems, people put it everywhere anyway. There were drastic effects seen in many native species, some disappearing completely from areas they used to inhabit. It is thought, although nobody really knows, that there are at least somewhere in the range of 900-1500 tons that were dumped by Montrose during those years. Sometimes the barrels of chemicals were dumped outside of the designated dumping spot because of its location in a naval weapons firing range, among other reasons. Often these barrels were punctured so that they would sink.

The "Ocean Dumping Act", or the Marine Protection, Research, and Sanctuaries Act of 1972, was the first official piece of legislation where environmental impact was first considered. Before that, there were no real regulations in place. Researchers in the 1960s were looking into environmental impact of DDT and started pushing back against its use, but Montrose and other companies pushed back. 

In the early 1980s, Allan Chartrand, a young scientist at the California Regional Water Quality Control Board in Los Angeles, started looking for answers about the deep-sea dumping. He contacted Montrose and started digging into a project that he says quickly became bigger than him. When the Environmental Protection Agency (EPA) got involved with a myriad of other officials and sued Montrose in 1990, the opposing claim was that the dumping wasn't relevant. They also argued against Chartrand's reports (the data from which came from Montrose) and the science was disputed. By late 2000, the parties settled for more than $140 million from Montrose and other companies, and local governments led by the LA county sanitation districts. This remains one of the largest settlements in the nation for an environmental damage claim, and was meant to pay for cleanup, habitat restoration, and education programs for people at risk of eating contaminated fish. 

This wasn't the end of the investigation and the consequences of the waste dumping, however. Litigation continues though for the aftermath. It is thought that dumping affected all kinds of ocean and land wildlife, and it is also hypothesized that the acid sunk into and affected the seafloor. Unfortunately, some of the original researchers ran out of funding and were unable to continue research. Other suits have been filed based on various data, and in August 2020, a $56.6 million settlement was finally reached over groundwater contamination and other problems as a consequence of dumping acid into the environment. There is also ongoing research that suggests the barrels are continuing to leak over time.

Dr. Venkatesan (geochemist at UCLA who studied the chemicals moving through the ocean) also ran tests/analyses in the 1990s and reached conclusions that there were bigger issues, but public concern shifted to aerosols so her work shifted too. She states, "I didn't know what to do with this data; I felt bad. As scientists we thought we could leave it to the politicians and the government to do their job...But if the government is not proactive, then people don't care. If people don't care, then the government doesn't do anything". New deep-sea robots validated her early claims and research though, and she's hopeful that people will care again.

The EPA tried an experiment where they dumped a clean cap of sand onto the Palos Verdes shelf site, but reports are mixed and the EPA hasn't really been actively involved for several years. DDT keeps showing up in Southern California in new, different, and unexpected ways, and researchers don't really know where it's coming from. The real question now is, how much will the jobs and science of the future be dealing with messes created in the past?

The environment is a mess, thanks to people of the past and present taking advantage of (and excessively abusing) the natural resources that we have on Earth. These chemicals (and others!) are still an issue, but nobody seems to have a plan. This is where things get trickier moving forward--cleanup is expensive and complex, but if we don't do something, we won't have the resources we need to continue living life on this planet. It's important that we do something, but what? There are a whole slew of environmental issues, among them is climate change. I agree with Dr. Venkatesan and Dr. Seuss, that "unless someone like you cares a whole awful lot, nothing is going to get better, it's not". 

Reference article:

Xia, R. (2020, October 25). How the waters off Catalina became a DDT dumping ground. Retrieved October 28, 2020, from https://www.latimes.com/projects/la-coast-ddt-dumping-ground/

A Fractured Inheritance (or is it?)

Personally, I've never understood the obsession some people have with others' genitalia. 

I know that it can be difficult for some to understand anything outside of what they perceive as being "normal", but science and psychology are coming to understand and teach that most characteristics exist along a spectrum. Forcing others to exist within your idea of "normal", because you see them as somehow less of a person or have a different set of experiences, is not only dehumanizing, it is also unethical and immoral. Society has historically tried to normalize people through surgery, drugs, institutionalization, or by labeling them as unwanted or "other", leading to social banishment/exclusion (Pence 315). 

About a month ago in my neuroendocrinology course ("Hormones and Behavior") we were discussing the biological sex differences in animals and humans, and as part of our discussion/lecture for the week we viewed a documentary on intersex persons, Intersexion. The documentary focuses on real people and their stories. This was the first time I had watched a full documentary on the topic and only had somewhat limited knowledge going into the assignment. It's a powerful documentary, and definitely worth watching. Over this past summer I also watched a film that was part of the Edinburgh International Film Festival about a transgender teen, Just Charlie. It is a well-made film that clearly and effectively portrays the main character's experience with gender dysphoria, coming out, and many other aspects of their experience. I've included a link at the end of this post to the full documentary on YouTube as well as the trailer of the film (currently available on Hulu and Amazon Prime). As a member of the LGBTQIA+ community, I know how important representation is, and would strongly recommend that everyone take a moment to listen to personal stories before forming opinions about a community or identity that they don't belong to or fully understand. Another resource worth watching is a TEDxUSU talk given by John Dehlin a handful of years ago on the power and importance of allyship. A little effort, education, and understanding go a long way. 

Before jumping into the ethics and some of the cases discussed, I want to start with some basics. These definitions come from the Human Rights Campaign website, hrc.org.

Sexual orientation: An inherent or immutable enduring emotional, romantic, or sexual attraction to other people.

Biological sex: Determined by chromosomes, hormones, and internal or external genitalia.

Gender identity: One's innermost concept of self as male, female, a blend of both or neither--how individuals perceive themselves. One's gender identity can be the same or different from the sex assigned at birth.

Gender expression: External appearance of one's gender identity, usually expressed through behavior, clothing, haircut or voice; and which may or may not conform to socially defined behaviors and characteristics typically associated with being either masculine or feminine.

Transgender: An umbrella term for people whose gender identity and/or expression is different from cultural expectations based on the sex they were assigned at birth. Being transgender does not imply any specific sexual orientation. 

Gender dysphoria: Clinically significant distress caused when a person's assigned birth gender is not the same as the one with which they identify.

This chapter is long and contains a lot of topics, and I honestly don't have the time or energy to write about them all here. I'm hopeful that the class discussion on this chapter will be productive, but I also know from past discussions that a majority of the class is fairly conservative and may not have a strong background or understanding of these topics. I'm definitely open to discussion though! For anyone reading this that has questions or wants to discuss anything related to this post and/or the chapter, please leave a comment and I'm happy to chat with you.

Chapter 13 in Medical Ethics is about the ethical issues in the treatment of intersex and transgender persons. The first case discussed is a famous one; I've heard about it in psychology classes, a genetics course I was in last year, my neuroendocrinology class, and now this one! It follows the case of David Reimer, a man who was born biologically male (as Bruce Reimer), lost his penis in a botched circumcision, and was raised as a girl (as Brenda Reimer). John Money, a psychologist at Johns Hopkins at the time (1967), was involved throughout the process and believed that early childhood experiences constructed a person's later gender identity. There are many controversial aspects to this case, including fraud and multiple attempts to cover up the truth about what was actually happening in David's life. By the time "Brenda" was 11, they were experiencing gender dysphoria and confusion about their identity. At the age of almost 15, David learned the truth and almost immediately decided to live as a man. After a complex life, including the loss of his twin, his wife, and his money, he successfully took his own life in 2004. 

On intersex people, the author of Medical Ethics concludes that as high as every 1/5,000 births are intersex people and that most intersex babies are born with ambiguous genitalia because of fetal development, and are therefore not anomalies (Pence 316). On sexual orientation, the author concludes that sexuality results from a complex mixture of genetics, biological interactions, and environmental factors (Pence 317). On gender, the conclusion is that it is more ambiguous than a strict binary, is complex and layered, and is a mistake to define sex as if there are only two straight-forward choices (Pence 320). 

I would argue that the most relevant ethical question in this chapter is one that the author poses, "What is normal and who defines it?" (Pence 321). Unfortunately, the society that we live in is one that often demands every individual fit into a binary. Whether that is for sports, gender on an ID card, or using a public restroom, it seems that many people have an opinion on others' gender identities and often care more than they should. It is vital that we work toward ending the shame and secrecy associated with being born an intersex person, transitioning to a gender other than the biological sex assigned at birth, any sexual orientation that is not heterosexual, as well as any and all other "issues" associated with anything outside what society deems as "normal". Shame and secrecy, as well as a myriad of other negative emotions, often compound and lead to various other psychological and/or psychiatric disorders. Forcing an individual to fit inside of a box or classification that you can understand is not ethical.

In conclusion, I agree with the author's assertion that it doesn't make sense for physicians to attempt to normalize every child born intersex, guessing which way is "correct" (Pence 326). Ultimately, it's unethical and morally wrong to force any individual into an identity or life with which they don't agree or identify with. No person, intersex or otherwise, should ever be required to put up a façade or live their lives in a way that doesn't feel authentic to themselves. Sometimes it makes things easier to understand when you can categorize, that's why stereotypes exist. But when categorization becomes harmful to another person, it's no longer beneficial to anyone. 

Intersexion: Boy or Girl? (Intersex Documentary) Real Stories

Just Charlie, Edinburgh International Film Festival Trailer

The ally within, John Dehlin--TEDxUSU

Textbook reference:

Pence, Gregory. Medical Ethics: Accounts of Ground-Breaking Cases. 9th ed., McGraw Hill, 2021.

Help is Other People

 The last couple of chapters in Medical Ethics have been more discussion-based, both in the book and in class. It has made it a little more difficult for me to write these blog posts, because I don't want to just regurgitate content from the book. I've actually enjoyed keeping up on this blog and being able to explore my opinions and develop them in a way that is backed by years of biological, medical, and philosophical research and discussion. Chapter 12, titled "Using One Baby for Another", goes back closer to the format of the first 9 chapters, starting with personal stories and building on ethical arguments from there. Not that that's a bad thing! Personal stories are where all of this stems from, because everything that has ever happened involving humans was personal to somebody. 

This chapter was a long one, and full of questions. The title for this post comes from the title of the chapter, which focuses on the ethical dilemma of using infants as "donors". This is a difficult question when it comes to babies born anencephalic, and potential organ "donation". It could be better framed as "organ transfer/recovery/reassignment", as the term "donation" requires consent from the donor (Pence 303). This is a complex question that is still being debated, and ultimately only would allow for about 30 recipients per year, according to one study (Pence 305). Anencephaly is the most serious of birth defects, and over 95% of anencephalic pregnancies identified prenatally are aborted and of those carried to term, 60% are stillborn (Pence 294). Most ethicists and doctors have agreed that the numbers are too small for massive changes to elicit changes in qualifications of brain death and the possibility of organ transfer (Pence 305).

So, even the shortest section in the chapter is complex and calls for several considerations. Now let's move to the rest of the content from this chapter, it's full of ethical and moral dilemmas and all of the good, complex, brain-splitting questions that I don't have answers to.

The first case addressed in this chapter took place in October 1984 with a baby born with hypoplastic left heart syndrome (HLHS), also known as the Baby Fae case. I'm going to focus on this case, even though there were others discussed. I'm sure we'll discuss them in class tomorrow. The answer/treatment/experiment involved in this case was a xenograft heart from a baboon two weeks after she was born, and she lived for 3 weeks after the operation. This case involves the use of animals as resources for humans, which is an ethical question that has been explored to some extent and still does not have a complete conclusion. Do we always put human beings ahead of "subhumans" and is it ethical to harvest organs from these organisms to use in humans (Pence 297)? Or do all primates have equal moral value (Pence 296)? Where does future research involving putting human genes in animals with the intent of eventually using those organs for humans fall in this spectrum? 

Another issue addressed in this case was the possibility for alternative treatment. The surgeon, Leonard Bailey, admitted that he wasn't looking for a human heart to use even though there was an infant heart available on the day of Baby Fae's operation (Pence 297). There was another alternative as well, a surgeon had developed a procedure (the Norwood procedure) for infants with HLHS that attempted to repair the left ventricle and had been successful in in 40% of operations (Pence 298). Whose decision should it have been? Was Bailey's decision to ignore the available human heart, not proceed with the Norwood procedure, and go after a baboon xenograft a logical and valid decision given his interest in xenografts and proximity to the case? Should he have involved a larger team? Should a xenograft even have been considered as a viable option given the low success rates in previous cases? 

In addition to this, informed consent in Baby Fae's case can also be called into question. Because Fae's mother did not have medical insurance and was not able to pay for expensive medical treatment, and because Bailey offered her the xenograft for free, was she exploited in Dr. Bailey's attempt to perform a successful xenograft? Was she informed of the risks of a xenograft? Was she even told about the human heart that was available and was that also presented as a free option? Does this lie under coercion? Did her consent really count as fully informed? 

And if this isn't enough questions/considerations, the media also got involved. This is an issue I have a clear stance on, though. I agree with Dr. Reemtsma on the issue of media involvement, that, "Science and news are, in a sense, asymmetrical and sometimes antagonistic. News emphasizes uniqueness, the immediacy, the human interest, in a case such as [Baby Fae's]. Science emphasizes verification, controls, comparisons, and patterns" (Pence 301). The media doesn't really have a place in this and while patients absolutely have a right to know everything that is going on with their personal cases, the public doesn't necessarily have a right to know details. Ethical and moral dilemmas can (and should!) be discussed, but the media doesn't need to sensationalize people's lives. 

I don't have exact answers to all of the questions raised in this case, but at the conclusion and after all is said and done, the case of Baby Fae qualifies as an experimental procedure. Ultimately, it wasn't one that offered a reasonable chance of benefit, all it really offered was uncertain and unknown chances, which fits under the definition of research (Pence 301). In this particular case, there are at least six pieces of incriminating evidence that indicate clearly that the path taken was not the best option at the time (Pence 303). There are other questions that come into play though, because medical research is required if there is ever to be further developments and discoveries. So, where and in what cases should experimental procedures occur? Or should they occur at all? Like I've suggested in other posts, I think a lot of bioethics comes down to informed consent and questions of viability. 

As there has been in previous chapters, there is a lot to consider here, and I'm looking forward to further discussion. Leave a comment, and let's chat about it! I'd love to hear from you.

Textbook reference:

Pence, Gregory. Medical Ethics: Accounts of Ground-Breaking Cases. 9th ed., McGraw Hill, 2021.

Leap to Faith

The consistent reoccurrence of Kantian ethics throughout the textbook is a good confirmation to me of my theme choice for this blog. The Good Place includes many references to Immanuel Kant, and due to my never having taken an ethics or philosophy course before this one, was my first real exposure to his philosophies. So the correlation is apparent to me. The title of Chapter 11 is "The God Committee", so naturally my first thought was in reference to the scene referenced below, even though it has nothing to do with the God Committee discussed in the textbook.

The opening sentence of this chapter states that the focus is on just allocation and personal responsibility for health (Pence 266). The discussion throughout the chapter focused on the major ethical question of "who deserves to live?" when making decisions about organ donations and transplants. Several cases were examined and the history of organ donation was explained in the context of bioethics. This chapter (along with the previous chapter) discuss ethics using a different approach than the book has previously, focusing on telling stories instead of a proposition/opposition comparison of potential ethical questions and issues. 

The main questions that exist now in organ donation/transplantation are more focused on who the recipients of the organs should be and the qualifications of a cadaver donor. These aren't questions I'm fully qualified to assess or answer, but there are multiple aspects to consider. When it comes to the recipients of the organs, should money and privilege be allowed to affect the patient's presence/position on a transplant list? Should the organs go to the sickest patients first, or the patients who would receive the most years of life from them? And brain-dead qualifications have been debated for decades by physicians and bioethicists alike. Do we move forward with finding additional criteria for brain death and accept/endorse the non-heart-beating cadaver donor protocol, or do we stick to the original Harvard brain-death protocol? At what point can we ask questions about the potential for assisted, facilitated, or even enhanced timing in a patient's death? 

This chapter also addressed the "rule of rescue" and the media's involvement in transplants and other medical procedures. Should people be allowed to self-promote in this way and get funding and/or medical attention due to their ability to be on television? This is another question that involves privilege and appearances, and will benefit attractive, articulate, white patients before people of color, and/or those who do not have these qualities. Disparities exist everywhere in healthcare, and this is another example of that.

Reading about the history of what may be considered common procedures is fascinating, especially considering that the medical and bioethics will continue to morph and develop as medical advancements are occurring constantly. 

Textbook reference:

Pence, Gregory. Medical Ethics: Accounts of Ground-Breaking Cases. 9th ed., McGraw Hill, 2021.

Best Self

 The topic for our next in-class discussion will be on chapter 10 from Medical Ethics, which is "ethical issues in first-time organ surgeries". This chapter focused on the accounts of the first transplants of several organs and the ethics accompanying each case. As a scientist, I think that research is both exciting and fascinating. And while new ideas are (usually) not gross, they definitely are complex. 

I found this chapter particularly interesting, especially from an ethical standpoint. Chapter 9 focused on medical research in vulnerable populations, and this chapter stems from that one somewhat. The difference here is that instead of blatantly exploiting vulnerable populations "for the good" of future research and medical advancement, the surgeons here were often motivated by fame and the desire to be first. Which, in my opinion, is only another type of exploitation, but this time for personal gain. I'm not denying that the first 100s/1000s of transplants were not beneficial to medical research, medicine, and society as a whole, but more that this argument boils down to intent and consent. 

In several of the accounts discussed in this chapter, the author mentioned the doctors/teams of physicians who did not achieve the fame and status of having done the 'first' of anything, but should have received the praise for waiting until the procedures could be done under the right, or more ethical, circumstances. I agree with the author here, that pursuing a surgery or a medical procedure/experiment of any kind should not be motivated by fame or personal gain, but that it should be motivated by the desire to do good and to improve the patient's life. In a nutshell, that's what the focus of healthcare should be! The good of the patient and their family, and an improved quality of life, and not at all focused on the physician. 

If true informed consent can be given, not coerced or given under any sort of influence, and the intent of the doctor(s) is where it should be, then research of this kind could be extremely beneficial in the long run. Organ transplants are often still 'experimental' though, and not yet classified as 'therapeutic' because the human body will eventually reject the transplanted organ in a large majority of patients, even with rigorous immunosuppressants. 

That's about the extent of my thoughts on this topic for tonight, but I'm definitely looking forward to further discussion. Discussion on whether or not organ transplants allow a person to be their best self, if progress really justifies all of the suffering of past (present, and future) patients, and/or the ethics surrounding the accounts raised in this chapter. 

Textbook reference:

Pence, Gregory. Medical Ethics: Accounts of Ground-Breaking Cases. 9th ed., McGraw Hill, 2021.

The Worst Possible Use of Free Will

Chapter 9 in Medical Ethics is focused on medical research on vulnerable populations. It's important that we discuss ethical issues in medical research regardless of who it involves, but especially when it comes to vulnerable populations. It is infuriating to read about past medical "experiments" involving human patients that violate ethics, and equally appalling is the fact that many of these "experiments" occurred not that long ago. We know that racial disparities (among others) persist in healthcare, and claiming that they do not is ignorant and irresponsible. In light of the current political climate and the ongoing fights for social justice, I've heard variants of the phrase "I don't know how to explain to you that you should care about other people" a lot more often over the last 6-8 months or so. That phrase also applies to this chapter. Dismissing human lives because they are somehow "less than" or are being used as a "means to an end" is not okay. The argument that these people are probably going to die anyway is not a justification to involve them in research, especially when consent is not obtained and the experiment is not explained to them. The mental gymnastics required to reach the conclusion that exploiting other humans, often without their consent, is acceptable in healthcare (and in general!) are completely mind-boggling to me. 

Anyway, let's move from my personal opinion back to the actual ethics discussed in the chapter.

The chapter opened with brief overviews of medical "experiments" performed by the Nazis during WWII, followed by a mention of the Nuremberg trials in which German physicians defended themselves against charges of war crimes by saying that they had merely been following orders (Pence 214). From there, the author moved to questionable research performed in America around the same time, research which often involved injecting patients with various levels of radiation. From WWII to the mid-1970s, American physician-researchers subjected over 16,000 patients to radiation experiments (Pence 215). Many of these experiments were justified and/or covered up by the US military. 

Following these, the author went into an in-depth explanation of the Tuskegee Syphilis Study, a study that is infamous in public health and biology for the lack of ethical treatment of its subjects. There are several ethical issues involved in the Tuskegee study, including the lack of consent, use of deception, blatant racism, ineffectual media coverage, harm to subjects and their families, and the motives of the researchers. In general, the purpose of healthcare is to help and support people with the goal of improving their health and quality of life. While some may argue that if no harm can be proved, nothing unethical has taken place, ultimate consequences aren't the only way to argue morality or ethics. In the case of the Tuskegee study, penicillin could have helped these patients, and resources were available to aid them. Instead, researchers deliberately willed harm on these subjects by using them as "mere means" to an end (Pence 225). 

The textbook cites several other cases that involve research on vulnerable populations, but ultimately the conclusion is reached that informed consent should always be required before moving forward in any research involving humans, and people should never be exploited or taken advantage of. Even in the name of medical advancement. If consent can be attained (not coerced) and an agreement reached, some research can be ethically and morally justified. Without it, choosing to conduct medical research on vulnerable populations is one of the worst possible uses of free will.

Textbook reference:
Pence, Gregory. Medical Ethics: Accounts of Ground-Breaking Cases. 9th ed., McGraw Hill, 2021.

Team Cockroach

 

This post isn't about cockroaches necessarily, but chapter 8 in Medical Ethics is on medical research on animals. As we've come to see in previous chapters, there is an abundance of unethical research that took place before regulations were put into place. This is definitely the case when it comes to medical research on animals. A few cases were cited at the beginning of the chapter involving research on primates, Gennarelli attempting to create reproducible head injuries and Taub attempting to stimulate regrowth after surgically cutting all the nerves in one limb (Pence 193, 196). The Animal Liberation Front (ALF) and People for Ethical Treatment of Animals (PETA) were involved in many of these cases, exposing the researchers' work and trying to get it shut down. These organizations, primarily ALF, also struck many other research facilities and caused damage as well as stole research animals, claiming abuse and unfair treatment. The associate director of City of Hope National Medical Center in Duarte, CA (raided in 1984), said that 36 dogs, 12 cats, 12 rabbits, 28 mice, and 18 rats had been stolen and that "we're concerned that very important research work may not now be completed" (Pence 194). ALF, activists, and other arsonists continued gutting research facilities throughout the 80's. In 1992, the Farm and Animal Research Facilities Protection Act made it a federal crime to break into a research facility on the premises of breeding animals for research (Pence 197). In 1993, a judge ordered that the 1985 Improved Standards for Laboratory Animals Act be enforced, demanding that the institutional animal care and use committees (IACUCs) were doing more to protect their institutions than the animals (Pence 198). 

Research on animals really didn't become an issue until the seventeenth century with Rene Descartes. Due to his philosophical approach, Cartesianism, he believed that animals were merely machines and that they had no soul and therefore experienced no pain. Thus, inhumane research and procedures were performed on animals without any type of anesthetic (Pence 199). Many of the ethical questions around animal research, the controversies at least, are centered around the questions of how much pain animals feel and whether their pain is like ours. Recent studies in neuroscience are taking us closer to some semblance of conclusions, but we also have to consider biases. For example, many societies throughout history (including ours) considered people of color and women to be "obviously" and "naturally" inferior to white men. This could potentially roll over into the issue of speciesism, and whether or not the equal ability to interact or suffer is equal to the rights that should be granted an individual--not all humans are equal in these things, so is it simply by virtue of being human that rights are granted? And should that always be the case?

The Official View on animals in research is that drugs must first be tested on animals to screen for toxicity and to indicate possible benefit to humans, and some researchers believe that "every major medical advance of the century has depended on animal research" (Pence 204). There are many critiques to this view, however, including the argument that the infliction of pain on animals is inherently wrong, along with claims that the Official View is based on bad science (testing drugs, devices, and techniques on animals doesn't guarantee results in humans), and whether or not the overall cost/benefit ratio is justified (results in humans justifying the suffering of animals) (Pence 205-206). 

Overall I think it's a difficult call to make. There is a massive amount of medical research (cancer, and otherwise) that has been developed using animal models, primarily mice, that cannot be replaced and would not have been discovered without the use of animals in medical research. I don't think that larger animals and primates should be subjected to extensive and harmful research in the name of advancement, especially where the results in humans cannot be guaranteed. If there is a way in the future to use stem cells and/or utilize embryonic research to look into some of this research while keeping within ethical bounds there, it would greatly reduce suffering in those animals as well as potentially provide more reliable results for humans. The respect aspect of embryonic and stem cell research should definitely remain in place, understanding that the work involves human cells, but maintaining large centers full of primates primarily for research borders on inhumane and unnecessary, as well as appearing irresponsible. 

There are also ongoing movements pushing to dissolve the use of chimpanzees in research, as well as discussions about xenotransplantation. Chimps are very similar to humans, and most developed countries (except for the US) have completely banned research involving these primates. Ethical issues surrounding xenotransplants include the worry about transferring various diseases into humans from the modified pigs (where the genetically modified organs are coming from) and discussions about a human-animal hybrid of genomes and whether or not that is ethical. On this issue, I would say that it is worth looking into from the standpoint that organs are often faulty and can't be spontaneously generated. On the other hand, it is important to consider that not all organs (even from humans!) can be safely transplanted into a human patient, so as research moves forward there are still many aspects to be actively considered.

Animal rights and animal activism has taken center stage from time to time over the last 40 years, and they aren't inherently negative. Activist groups, and others who advocate for animal rights have made many legitimate arguments against animal research. However, even though there are many important considerations, medical research in animals has contributed to many discoveries that we would not have otherwise. It's a difficult discussion, and one that I'm confident will continue developing as further research in animal behaviors and neuroscience is published. 

Textbook reference:

Pence, Gregory. Medical Ethics: Accounts of Ground-Breaking Cases. 9th ed., McGraw Hill, 2021.

Term Paper! (this is definitely the Bad Place)

How are we to the point in the semester where I have to be thinking about a term paper already?

The issue that I will address in my term paper for this semester is genetic testing. There are many ethical questions and potential dilemmas surrounding genetic testing and the information gained from the results of these tests. This issue is relevant to me because I plan on attending graduate school in genetics, specifically genetic counseling. I have been interested in genetics since high school biology, and upon discovering genetic counseling as a potential career, have set my sights there. Thus, the issues of genetic testing are directly relevant to me and my future.

Some of the main issues surrounding genetic testing:

1.      Diseases

a.       Preventing disease

                                                              i.      sometimes the patients will get the disease either way, regardless of the knowledge

                                                            ii.      presymptomatic testing can give some people a window of control (cancers, Alzheimer’s, diabetes) but not for other diseases (Huntington’s, other cancers)

                                                          iii.      free will and responsibility for health and disease, but also we need to avoid genetic fatalism

1.      responsibility (actions, diet, habits, etc.)

2.      genetic fatalism—“I have X gene, so I’m doomed” vs “you could’ve done X to prevent this”

b.      Testing and sick identities

                                                              i.      benefits vs disadvantages of knowing genetic information, if you know about a disease (Huntington’s, Alzheimer’s) some people might identify as “sick” long before they’re actually affected, is the burden of the information worth it?

                                                            ii.      Preventing suicide by not knowing

1.      statistics of patients with Huntington’s and suicide, patients wanting control/not wanting the suffering that comes with disease

2.      The decision to be tested/order genetic test(s)

a.       Testing as self-interest

                                                              i.      preventative measures possible with the information, not possible without the information, but is it worth the stress/worry to have that knowledge

                                                            ii.      Testing only to hear good news

1.      “when people say they want this test to find out if they have the gene so they can make decisions, they really want to find out that they don’t have it” (Pence 371).

2.      Testing as a duty to one’s family

a.       your own genetics and genetic fate don’t only affect you; it also affects your family (nuclear, extended, and future)

3.      Testing one’s family by testing oneself

a.       by testing yourself you’re also testing your family; the information doesn’t only affect you

4.      Testing to find biological parents and siblings

a.       genetic information is powerful; you could find relatives without meaning to

3.      Testing responsibly

a.       Direct to consumer (DTC) testing

                                                              i.      assure the quality/reliability of the test and the information before purchasing if not an official medical test

                                                            ii.      lack of counseling available

                                                          iii.      news you didn’t want/weren’t expecting (disease, family, etc.)

                                                          iv.      companies doing genetic testing for profit instead of for the benefit of the patients

b.      Testing only with good counseling

                                                              i.      genetic testing should only be available with good counseling

                                                            ii.      issues with DTC testing, and general lack of accessible genetic counselors

4.      Genetic research and other implications

a.       Premature announcements and oversimplifications (as well as the lack of knowledge about certain genes, disorders, etc.)

                                                              i.      early diagnoses could be problematic if they are incorrect

                                                            ii.      further diagnoses could be problematic as the science develops and the research comes forward

b.      Mitochondrial donation therapy, gene therapy, CRISPR, embryo repair

                                                              i.      where to draw the line? For what can we use the technology for good, and if we allow certain procedures/research developments, then will those be abused?

                                                            ii.      research would probably need to be done on embryos (additional set of ethical issues)

c.       Eugenics

                                                              i.      testing to eliminate/eradicate/minimize certain genes, characteristics, diseases, etc. vs testing to selectively choose other “desirable” genes (sex, hair, eye color, intelligence, etc.)

 

References

Andrews, L. B., Fullarton, J. E., Holtzman, N. A., & Motulsky, A. G. (Eds.). (1994). Social, Legal, and Ethical Implications of Genetic Testing. In Assessing genetic risks: Implications for health and social policy (pp. 247-290). Washington (DC): National Academies Press.

Fulda, K. G., & Lykens, K. (2006). Ethical issues in predictive genetic testing: a public health perspective. Journal of medical ethics, 32(3), 143–147. https://doi.org/10.1136/jme.2004.010272

Pence, G. (2021). Ethical Issues in Pre-Symptomatic Testing for Genetic Disease: Nancy Wexler, Angelina Jolie, Diabetes and Alzheimer's. In Medical Ethics: Accounts of Ground-Breaking Cases (9th ed., pp. 362-390). New York, NY: McGraw Hill.

Than, N. G., & Papp, Z. (2017). Ethical issues in genetic counseling. Best Practice & Research Clinical Obstetrics & Gynaecology, 43, 32-49. https://doi.org/10.1016/j.bpobgyn.2017.01.005