by Sophia Greene

Summary of the Material

Throughout Chapters 7 and 8 of Care and Cure, Stengenga discusses held beliefs in the scientific community regarding the management of research and how researchers come to conclusions after examining the resulting data. One principal school of thought that establishes evidential hierarchies is the evidence-based medicine movement, which emphasizes meta-analyses and randomized controlled trials over cohort and case-control studies. 

Stegenga also explains the process that medical interventions have to undergo before they can be implemented in a clinical setting, and within this discussion he defines two types of studies that are typically conducted: randomly controlled trials (which include randomly allocating some participants into an experimental group and others into a placebo or control group), and case-control studies (which analyze subjects who already grouped together with a specific feature). It is important to understand the difference between these two types of research methods as case-control studies often lead to confounding factors that can lead to correlation being misinterpreted as causation. 

Stegenga further goes on to explain the different biases that can similarly affect scientific conclusions, including confirmation bias, which has a tendency to confirm pre-existing beliefs, and design bias, which is built into the internal design of an experiment. 

Then, animal models and their extrapolation on human populations are discussed, heavily emphasizing the difference between simple extrapolation – the presumption that causation in one population is always justified in another population – and strict extrapolation – the belief that the two populations must not have any causally relevant differences. Both of these methods of thinking lead to the problem of the extrapolator’s circle because they both rely on unknown knowledge to either confirm or deny said unknown knowledge. 

Stegenga goes on to discuss meta-analyses and how they can often lead to different conclusions drawn from the same data, demonstrating how different researchers can make unconstrained choices in how to analyze the evidence. 

To combat this and make research as objective as possible, some researchers believe in the black box thesis, which holds that conclusions should only be based on quantitative evidence, while others believe in the mechanista thesis, which claims that inferences must be based in part on mechanistic evidence – that is reasoning based on the expected effects of interventions based on knowledge about how systems function. 

Moving on to Chapter 8, Stengenga starts by defining objectivity, which is the extent to which evidence is reliable for making inferences, or the extent to which evidence is truth-conducive. He goes on to discuss two major issues that often impede objectivity – namely, publication bias and conflicts of interest. Publication bias occurs when research that finds medical interventions to be ineffective is much less likely to be published, and this is due to the fact that industries often sponsor these studies, and therefore “own” the evidence and can choose whether or not to publish it. Additionally, medical researchers and physicians are often employed or partnered with these sponsors, which makes it difficult to tell if research is truly unbiased, resulting in a conflict of interest.

Another large issue in Stegenga’s discussion of research is in deciding how to regard non-epistemic values in the design and conclusion of experiments. A strong argument is the value-free ideal, which holds that non-epistemic, or statistical, values should not play any role in scientific reasoning; however, many critics argue that that ideal is impossible to uphold, as inherent values of ethics and common sense are used in conducting research. 

Finally, Stengenga considers the idea that the science community can be the solution to maintaining objectivity, highlighting the importance of shared standards to uphold and a response to criticism which allows for new innovation but also checks the validity of such innovations by allowing experts to combat false information and therefore, uphold the objectivity of medical research.

Discussion Questions

• Is the placebo effect inherently good or bad? What about in relation to confirmation bias? Can placebos be considered medical interventions?
• Is extrapolation from animal studies to humans warranted? If so, which approach (simple, strict, or mechanism-based) best legitimizes scientific claims of causation?
• Which values do you believe should be permitted to influence the scientific process? (ie. cultural, ethical, social, political, financial values)
• Additional questions to be considered (not discussed):
  • Do you think that, because critics claim that even randomized trials can never really eliminate confounding factors, all trials should be regarded as flawed?
  • How do the issues of confounding factors and biases influence the day-to-day of practicing physicians, and how do we best eliminate these issues?
  • Should either the lack of statistical evidence or mechanistic evidence be grounds for the invalidation of medical conclusions?
  • Is the way in which we use the term “objective” in everyday speaking accurate to its meaning? Is it possibly harmful to our perception of the information we are presented with?
  • Should industry sponsors of medical research own the evidence from a study? If not, how would that be enforced, and would it affect the amount of research conducted if sponsorships are withdrawn?
  • How is criticism in the scientific community an important factor in advancing objectivity and innovation?

Summary of the Discussion

We opened up our discussion of medical knowledge with the question of whether placebos should be viewed negatively or positively and if they should be valid medical interventions. One thing that was quickly established is that the placebo is not inherently good or bad. Rather, the question lies in how physicians may decide to use it and how they may affect the patients. Throughout the discussion, we mainly considered two areas of thought. One argument was established in the idea that although placebos have their place in research, they should not be used in daily operations of the medical field, such as doctors prescribing them to patients, because it is established in a lie that violates the autonomy of the patient. Furthermore, this dishonesty violates the integrity of the medical field and ties back into medical paternalism as the doctors are essentially making the decision for the patient. On the other hand, if one views the issue through the lens of the biopsychosocial model, taking a placebo may help a patient improve not just physically but also psychologically, improving their overall well-being and health. Additionally, this perspective combats the idea that placebos hurt the morality and responsibility of the medical field by proposing that a patient who seeks out a physician to help them feel better would be less trusting of medicine if that doctor sends them away without any treatment and that a placebo might at least treat some symptoms if not the cause of the illness. While a consensus was not reached, these two attitudes regarding the use of placebos in medicine are both very impactful considerations.

Subsequently, we discussed extrapolating animal studies to humans and which approach to view these correlations is most legitimate. Our class soon agreed on the fact that it is currently necessary because there are limitations on human testing, and that it is most warranted when assessing possible risks to a human population. Additionally, we considered the fact that the simple approach can be relatively difficult to use when they have disparate functions, which means one should be very cautious when drawing these types of conclusions, while mechanism-based reasoning is very useful if there is an underlying basic understanding of the functions between two populations. Moreover, this discussion led us to examine the role of animals in research, and after debating what constitutes justification for any harm done, we concluded that it should be based on epistemology: if there is low epistemic value for causing suffering, the medical knowledge that we are producing is not justifiable if it can not be legitimately extrapolated to humans.

Finally, we considered which values should be permitted to influence the scientific process, given that the value-free ideal is unachievable. While there was the initial impulse to want financial values to be far excluded from the medical world, we did realize monetary concerns are necessary because they are involved in the regulation and funding of research. We considered having an outside committee that is filled with educated members to allocate funds to projects; however, this concept proved to be flawed due to the fact that many sponsors would not want to fund a lab if they could not control the resources. Overall, we came to the understanding that it is impossible to separate values such as financial concerns from medicine solely because so many aspects are contingent upon each other.

Response

Although the understanding of medical knowledge and how it comes about through research can at first seem tedious and demanding, it outlines many foundations of medicine and affects our understanding of current treatment and ongoing research projects along with their future applications. Our discussion of placebos related to many aspects of our previous discussions and raised questions that helped us apply these concepts to real-world examples: how do you define health? Is the goal of medicine to address the cause of the problem, the symptoms of the problem, or both? Does the integrity of medicine rely on the morality of truth or the relationship between the physician and patient? These are important considerations that we should contemplate so that we may be more prepared for conflicts that we may face in the future. Additionally, I find it incredibly pressing to ask ourselves what values should be considered in science and the medical field. In truth, we should question whether these concepts can even be appraised separately at all, as they constantly influence each other in practice if not in theory. Answering these questions for ourselves and recognizing the nuances between the purely empirical facets of medicine versus the sociocultural and economic acceptances and interpretations of scientific evidence will allow us to acknowledge and accept our own tendencies to be influenced. Overall, the discussions we encountered helped to prompt ways of thought that can ensure our understanding of not only the foundations of scientific study but also their implications in everyday life within the medical field.

Works Cited
 Stegenga, Jacob. Care & Cure: An Introduction to Philosophy of Medicine. University of Chicago Press, 2018.

Butler Beaudoin

Summary

Disease is a complicated subject and can be discussed from the standpoint of how the medical community defines it as well as how it affects one’s everyday life. There are several distinct viewpoints which attempt to define disease.  Naturalism focuses solely on malfunctioning physiological systems, normativism focuses on generally disvalued states, and hybridism is a combination of both viewpoints. In contrast, eliminativism states there is no need for a clear-cut definition of disease.  Much like the topic of health, most disagreement regarding disease involves treating it as a decidedly concrete and objective concept versus treating it as a somewhat fluid and subjective concept.  As acknowledged in our class discussion, disease and health are deeply interconnected, so it is difficult to discuss disease without first considering health. Health, unlike disease, is examined through the lens of only two primary viewpoints: naturalism and normativism.  Naturalism claims health is simply the absence of disease while normativism regards it as a state of well–being.  Much like their counterparts which attempt to define disease, naturalism is rather objective, while normativism takes a more subjective approach with a particular focus on mental health.

Furthermore, disease can also be examined from a phenomenological standpoint by observing and assessing how it pervades numerous aspects of one’s life. I believe this practice can be highly beneficial for healthcare professionals today.  Utilizing Engel’s biopsychosocial (BPS) model of health and illness, we now understand biological, psychological, and social factors can all contribute to the presence or growth of a disease.  To further complicate matters, various interrelationships exist between the factors which can play a crucial role in promoting overall health.  I believe one practical application of this BPS model is to evaluate mental health and psychological disorders. For example, sustained stress brought on by social factors can influence biological and psychological factors (S–>B and S–>P), and, as mentioned in the discussion of neuroplasticity, psychological factors like learning new motor skills can influence biological factors such as neural pathways.  Both the negative relationship and the positive relationship can pertain to one’s mental health and are significant to the phenomenological discussion.  I feel that mental health is largely more susceptible to social and psychological factors, and, consequently, I believe mental health disorders can more easily be attributed to disvalued states, as normativism suggests.

These are the discussion questions for my presentation.  Although I was unable to address each one directly, I attempted to apply them to the discussion and was able to initiate interesting dialogue as a result.

• I thought it was interesting how Stegenga addressed four viewpoints concerning disease but only two on health. Why do you think that is?

• Do you believe we should have hybridism and eliminativism in reference to health?

What would that look like?

• Do we need a general concept of disease (Hesslow’s car mechanic analogy) or should we focus more on the phenomenological standpoint? (Using the car analogy, that would be like the mechanic asking how her driving experience is being affected by the car malfunctioning instead of arguing about whether the car is defective or not)?

• In my presentation, I really highlighted how I felt there should be a separation between physical and mental health when considering the topic of disease. Do you feel there should be a separation or are they one in the same?

• Do you feel that mental disorders should be viewed from the standpoint of normativism?

• All six potential pathways in the BPS model can potentially contribute to subjective well-being and to objective physical health outcomes. Which of these do you feel is most important in the medical field today?  (For example, I believe B–>S is very important right now.)

Class Discussion and Response

The discussion was largely dominated by the subject of mental illness.  Initially, it was somewhat challenging to reach a mutual agreement concerning the definition of disease in the context of mental health.  However, by utilizing hypothetical examples and actual cases in our discussion, we were able to approach the topic from a phenomenological perspective.  To clearly illustrate how some people who suffer from poor mental health claim to be healthy, one classmate referred to Hesslow’s car analogy discussed in Care and Cure, arguing that it was like driving with flat tires, either unknowingly or apathetically.  At another point, a classmate returned to another hypothetical situation from Care and Cure which discusses a monk who meditates inside a cave on a mountain and refrains from eating and sleeping.  It would appear this monk is unhealthy from the standpoint of modern medical practices, but he is content and highly functioning.  The case of the hypothetical monk presents us with an important question: how can we distinguish between healthy and sick people?  Several classmates felt that a person is sick when they have a condition which is harmful to them, in the sense that an unknown condition which is not impacting a person does not constitute a disease.  The argument was also made that unless a disease is communicable, implying it possesses potential to bring harm to others, many illnesses of both physical and mental varieties strictly affect the person with the condition.  In my opinion, a person is healthy when there is an absence of all mental and physical conditions.  If the lack of shelter, food, and sleep is causing the monk harm, I would say he isn’t healthy; however, he is also not diseased.  The class eventually arrived at the conclusion that we tend to treat physical ailments differently than mental disorders.  A person suffering from depression, for instance, may receive a prescription from a physician, but they will also likely be referred to a therapist for additional treatment.  While this isn’t a necessarily inappropriate step, the concern is whether doctors in the medical field today have completely isolated issues which pertain to mental health from physical disease.  In conclusion, I believe medical doctors should more frequently employ therapeutic practices.  This is not to say either physicians or psychologists are ineffective in their respective fields, but merely to suggest that the strategies of therapists and psychologists may be beneficial if implemented more widely in the modern medical field.

Works Cited

Stegenga, Jacob. “Disease” Care and Cure – The University of Chicago Press, 2018

Karunamunia, Nandini, Imayamab, Ikuyo Goonetilleke, Dharshini. “Pathways to well-being: Untangling the causal relationships among biopsychosocial variables” Social Science and Medicine, https://doi.org/10.1016/j.socscimed.2020.112846

Victoria Hand
IDMD 101
Professor Emerson

Medical Paternalism – Discussion Summary

My presentation topic covered a two-part paper by ethics philosopher Daniel Groll, which discussed the definition and ethics of medical paternalism. The first half of Groll’s paper addressed the question “What does it mean to act paternalistically?” in a medical context. To do so, he streamlined the concept of paternalism into a concept called the beneficence account, which defines paternalism as when physicians act “only or overridingly out of concern for (the patient’s) good.” The second half of the paper asks when it is acceptable for a physician to act paternalistically. Groll introduces two principles, the beneficence principle and the autonomy principle. The beneficence principle states that physicians should act in ways that are ultimately beneficial for their patients, while the autonomy principle states that physicians should respect a patient’s right to make their own autonomous decisions. Groll concludes that if you undermine the autonomy principle in favor of the beneficence principle, you are violating a competent patient’s right to choose, making your paternalism problematic. However, if you act paternalistically without violating the autonomy principle (e.g. a surrogate decision maker making a decision for an incompetent patient), paternalism may be both justified and unproblematic. After the presentation, our class discussed two questions about the topic that I presented. Overall, I feel like we focused more on the concept of whether or not certain physician decisions were justifiable in favor of discussing the amorphous definition of paternalism itself. In addition, people tended to focus more on “black-and-white” responses – that an action is either justified in all cases, or it is never justified – which I believe does not appropriately encompass the complexity of the issue. In hindsight, I wish that I had moderated the discussion more closely so that I could have moved the conversation forward to further questions, which addressed less dichotomous scenarios and the definition of paternalism. 

Question 1 asked which is more important – respecting a patient’s autonomy or acting solely for a patient’s own good? I made this question as general as possible in order to spark a wide range of conversation. During the following debate, the main arguments for autonomy were as follows: A competent patient knows what’s best for themselves, a physician can’t be aware of all of the factors that go into autonomous patient decision making, and that allowing patient autonomy maximizes well-being because it fosters trust between patient and doctor. Arguments for the beneficence principle included: Some patient decisions can affect others (e.g. the choice not to get a vaccine can harm public health because others could be infected), and that surrogate decisions (such as parents making a decision for their children) can be a very grey area. In the latter scenario, it may sometimes be more ethical for physicians to make the decision to care for the child. Selene mentioned an example where a child had terrible seizures and needed brain surgery; the parents declined, and so the child died. This point led the discussion to parent-child decision making, where we discussed when doctors can step in if a parent is making an objectively poor medical decision for their child such as denying life-saving treatment. I noted that the class approached this problem in two different ways, and their side of the debate typically reflected either the biomedical or the biopsychosocial model. BM model debaters focused primarily on the biological health of the child. They said that parents should have less autonomy if a child is in danger, and that certain social values (such as religious beliefs) should be discarded in favor of saving a child’s life. BPS debaters tended to favor psychological and social factors, debating more about the importance of culture and disclosure; their arguments included that religions should be respected as it improves individual well-being, and that if a doctor gives patients “all the information” (however that may be defined), parents should have full autonomy even if the child is in danger. They also mentioned that BP model people are downplaying the potential risks and financial/social costs of certain medically beneficial treatments for children.

The second question asked how, if at all, patient autonomy affects patient well-being, and how that could play into medical decision-making when considering whether or not paternalism is justifiable. The class unanimously agreed that in the large majority of cases, prioritizing patient autonomy fosters trust between patient and physician and has a positive effect on well-being. This includes disclosing all relevant information about a patient’s treatment. They also said that a lack of autonomy will have a negative affect on the patient and can result in “stress”, “fear”, and a “lack of trust”. Then we moved on to discussing in which situations beneficence – in the context where it is paternalistic – may be justified. Some topics brought up for when beneficence may be justified include when a patient is harming others, having suicidal thoughts, or if they are addicted to drugs. We talked about whether or not patients could be considered competent in the last two cases – whether a patient is exercising will and whether or not their autonomy should be prioritized if their mental being is unhealthily altered. Most people said that in these cases patient autonomy should still be respected, but that other consultations (such as speaking to family and considering social and psychological factors) should be considered before deciding on the specifics of disclosure/treatment. The conversation then moved to whether or not religious beliefs should be respected in patient autonomy, and most people agreed that religious beliefs should be respected.

After reflecting on the class discussion, I have come to the conclusion that there are some specific class “trends” that limit meaningful debate. In particular, both sides of the different debated scenarios seemed to idolize physicians as the “autocrats of objectivity” (Hand, 2023). Most of us are seeking to enter medical school and become physicians, so it makes sense that we would be biased towards seeing physicians in a more positive light. However, it’s notable to mention that doctors aren’t always good people, and that it’s important to consider checks and balances when talking about the power physicians have instead of believing that physicians will always strive towards ethics, correctness, and moral good. The class also seemed less willing to talk about “greyer” topics that required non-dichotomous thinking. Most people wanted a “hard and fast rule” that applies to specific scenarios, and debated as to what that rule should be. In Groopman’s “How Doctors Think”, he discusses the decision-making capability of contemporary doctors, and mentions that they are being “condictioned to function” within a “strict binary framework”. In the future, I hope to make an effort to direct the discussion to more individual, subjective topics to discourage this sort of thinking during debate. Viewing this discussion from a moderator’s perspective with the goal of neutrally taking notes and asking questions helped me gain a valuable view on how our debates trend as a whole, and I aim to utilize what I’ve learned to facilitate a more meaningful and intellectual environment for everyone in the future.

By Anna Chong

Brief Summary of Reading:

Physician-assisted death is when a physician provides a patient with the means and information necessary to end his or her life. Only six countries and ten U.S. states have legalized the procedure. In the Hippocratic Oath, doctors explicitly promise to not administer a poison to anyone. As a healer, physicians want to promote the patient’s good (beneficence principle), and also avoid harming the patient (nonmaleficence principle).

The concept of medical futility refers to cases in which there is no reasonable way for the patient to be helped. Quantitative futility and qualitative futility are tools that set standards for when interventions become futile, when likelihood and quality of benefit fall below a minimal threshold. Futile interventions can give patients false hope and cause the physician moral distress. The justice principle is about allocating resources and treatments to patients who can benefit instead of wasting resources on patients who will not.

Physician-assisted dying relates to physicians, morality, and dignity. The “significant responsibility argument” and “significant relationship argument” assert that physicians bear some responsibility for the situation of their dying patients and have built up a relationship of trust, so physicians be the ones to carry out the assisted dying procedure. The “dignified lives argument” is that protecting dignity for terminally ill patients may involve giving them the ability to control when and how they die. The concept of action vs. omission is whether taking action to end a life is different from omitting life sustaining treatment.

Discussion Questions:

1. Is there a difference between withholding/withdrawing life-sustaining treatment (omission) and prescribing a lethal dose (action)? (consider moral and conceptual perspectives, outcomes, and intentions)
2. What circumstances can euthanasia be justifiable under, if at all?
3. Should doctors be required to give euthanasia to patients who demand the procedure (autonomy principle)?
4. Should doctors be able to suggest euthanasia as a recommended medical procedure?
5. Should doctors be required to notify family members if a patient requests euthanasia? And if a family member or friend of the patient objects, should doctors carry out the wishes of the patient or the family?

Class Discussion:

Our class agreed that withholding/withdrawing LST and prescribing a lethal dose were conceptually different, but looking at the situation from a moral standpoint is more complex. Some patients want to die with dignity. In Canada, euthanasia is allowed for some psychiatric patients (MAiD).

Then, we started to talk about how a physician’s intentions matter. One argument is that withdrawing or withholding life-sustaining treatment (LST) allows the patient to live their lives and leaves room for a miracle, whereas prescribing a lethal dose is giving patients exactly what they need to kill themselves. However, a counterargument is that omission itself is an action. When LST is withdrawn, the physician knows that the patient will die. The intention and knowledge – knowing that the patient will die – is the same. Whether a physician withdraws LST or prescribes a lethal dose, both options mean that a physician is admitting the patient is going to die.

Our class agreed that if someone wants euthanasia, there should be multiple steps completed before the euthanasia is administered. The patient should have to sign paperwork, get their request approved by a council, and also have a conversation with the doctor and someone that the patient loves and trusts. A patient might not be in the best state of mind, so someone that the patient trusts should be there before the patient makes a rash decision. The physician should let the patient know euthanasia is an option and lay all cards on the table in a medically futile case.

Although patient autonomy is important, physician autonomy should also be taken into consideration. If a physician feels that administering euthanasia conflicts with their moral values or ethics, then the physician should not be forced to do the treatment. The physician should refer the patient to another physician who will do the treatment.

At the same time, physician autonomy is a slippery slope. Can a physician deny a patient of any treatment just because the physician does not believe in it? What if a physician denies a patient based on a patient’s identity, or because the physician does not believe in the procedure?

Doctors are there to serve. If doctors are not treating their patients to the extent they need help, then perhaps doctors are not doing their jobs.

Some terminally ill patients cannot do much with their lives; treatment can extend life, but cause quality of life to suffer.  A patient could be on so many pills that their body lives but the person inside deteriorates so much that they are unrecognizable. One perspective is that euthanasia ends suffering. Perhaps we should be asking ourselves, from the physical, mental, and spiritual perspectives, what is death, and what is life?

For example, if a physician unplugs someone from life support, the physician is withdrawing treatment but also killing the patient. If you take away the very thing that keeps someone alive, you are still killing them.

When we discussed how much a patient’s family should know, we agreed that although physicians should notify family members, but patient autonomy rules – the patient should still be allowed to get euthanasia even if the family members object. Also, there is the possibility that physicians cannot legally tell anyone that their patient is considering euthanasia. HIPPA protects patients and their health information from being disclosed, and requires the patient to give permission before a physician can share health information with someone else.

Reflection:

Physician-assisted death is a complicated topic with no objective correct answer. Medically futile patients have to ask themselves: at what point is life not worth living anymore? And what does it mean to live a fulfilling life? Patients who have to face these difficult existential questions are conflicted with a roller coaster of emotions, and the physician should be there to help guide them through this emotional thought process.

Death can be defined in multiple ways. We should all ponder the meaning of death. Death can be defined from the physical perspective and the physical body giving up. Death can also be defined as the death of personhood and soul, where one’s mind deteriorates until they are a ghost of who they used to be, such as patients who are in a permanent vegetative state.

During the end of the discussion, we explored the idea that the omission vs. action debate is not really a debate at all: not doing anything is an action. When one chooses to not do anything, they are choosing to stick with the status quo. If we view omission as an action, then perhaps pulling the plug for life support is not really that different from euthanasia.

Finally, we need to take into account the responsibility of physicians. Physicians brought upon the treatment, and so medicine should bear some responsibility for the pain that patients experience.

We can strive for a particular ideal of ethics in the realm of medicine, but the boundaries and ends of medicine are evolving. We as humans need to ponder and meditate on these difficult and personal questions on what it means to live, to die, and medical ethics.

Alejandro Gonzalez
9/5/23
IDMD 101: Medical Foundations I
Presentation Assignment
This week’s topic is about consent, and for today’s readings specifically about informed
consent and autonomy.
The first article from Faden and Beauchamp discusses what is informed consent and
breaks it up into two different “senses”. Sense1 is about informed consent being an autonomous
decision where the patient’s role in making decisions about their healthcare is emphasized and
they actively authorize a proposal or medical procedure. Sense2 is more of an institutionally or
legally effective route of authorization. The focus here is on rules and requirements needing to be
met that were set up by institutions. So, it’s not just an autonomous decision but also a need for
compliance with established procedures. It then goes on to discuss the challenges of balancing
the ethical principles of patient autonomy with established rules. In the end, I believe that Faden
and Beauchamp have more of a favor to sense1, stating that it is the true meaning of informed
consent and that the shared decision-making, which involves a legal definition that aligns more
with sense2, is confusing and rather ineffective.
The second article from Millum and Bromwich also talks about the ethical considerations that
need to be made about informed consent, but this is more focused on the topic of medical
research. For them, it breaks down into two different requirements. One is a disclosure
requirement, where the researcher must disclose all information that is relevant to the participant
and what the participant would reasonably be expected to be told. The second is an
understanding requirement which is that the participant should know that they are being asked
for consent, how to exercise their right to give or refuse consent, and what they are giving
permission for. What the authors emphasize though is that the main function of informed consent
is to make sure the consent is valid and there is a promotion of good communication and
decision making. There were cases presented where patients really didn’t know the full extent of
the research, but that consent was still valid if patients understood the key elements. This then
leads to the importance of effective communication which the article mentions current practices
involving obtaining consent, such as lengthy and complex forms, does not promote that. Rather
agree with and welcome some recent changes in regulations that utilize concise presentations
that give the key information to patients.
So, we can see how both articles discuss the concept and ethics behind informed consent,
though the first article focuses more on medical procedures while the second article is about
medical research.
Discussion questions:
1. How do you define “informed consent”?
2. What is the balance between patient and rules? Whose rights should take precedence?
3. How much should a patient know/ be aware of before consenting?
4. What improvements/changes would you propose to enhance the ethical conduct of
research?
Notes:
• Noah takes an eliminative focus on informed consent, wants each consent form to be
unique to the study and the population group, so you can’t really define informed consent
in one concrete way.
• Some argue for a legal definition of informed consent to protect doctors.
• Without a definition, it leads to inconsistencies and grey areas.
• Consent is needed so doctors don’t take advantage of patients.
• Should have a legal decision, but room for adaptability.
• Adults can consent to whatever they please, but for a minor its different and the doctor
should take control.
• Parents would know best for their children.
• Cannot force anyone to do anything.
• Where should we draw the age of consent in a medical sense?
• What about children in an abusive relation with their parents
• Physicians should report to authorities but should sustain the patient.
• Should be a check list of things being ticked off such as risks/procedures act.
• And allows for patients to ask to follow up questions.
• If the side effects are headaches its less sever then a side effect of kidney failure
• Should make consent forms easier to understand and shorter.
• No pregnant woman wants to enter research trial.
• Consent is more of a humanities problem than a legal one.
Summary of the discussion:
There were a lot of tangents to the main conversation of informed consent, but the summary of
how the discussion ended is as follows. Firstly, that we should have a legal definition for consent
to protect doctors (and hospitals). But the challenge is that we wanted there to be some fluidity
so we can adapt it to different situations. When it came to whose rights should trump all is that
the patient ultimately had free will and autonomy, but it then got complicated when it came to
minors and where we draw the line of the age of consent. Finally, kind of combining the last two
questions, patients should ideally know and understand all essential elements of a research
experiment before consenting, and we can do better by presenting information in an effective and
concise way, and if the participant has any questions or concerns, they should be an environment
where they are able to facilitate this.
Response:
Overall, I was happy with the discussion we had, though a little hectic at sometimes. As always
there are points and flaws to both sides, but I took away that in the end we came to an eventual
agreement on most things. What really came to a point for some people was patient autonomy
and how much emphasis we put onto it. Some believed that the doctor should do what they think
is in the patient’s best interest, even if the patient doesn’t necessarily agree with the procedure,
while others believed we should respect people’s decisions. I didn’t expect for some people to
believe that there was no need for us to define consent or the fact that we should just experiment
wildly on animals, and the conversation also took a turn to vaccines which I want entirely
expecting either. Finally, the crux problem of informed consent is how much should the patient
understand and how much should the researcher disclose. The one point that really clicked with
me was the line “could impair kidney function”, and the fact that people might not even know
how their kidneys function. So, the problem is that even if we disclose information, how specific
should we get, which could lead to making forms longer and more complex. I believe a solution
is to create a safe and trusting environment so that when a participant receives a form, that is
concise and shorter, they can freely ask questions so that they can fully understand the aspects of
the research.