1. Rashmi Borah | The Ohio State University
National Collegiate Research Conference, Harvard University
January 22, 2015
2. Voluntary, permanent removal of a currently
healthy limb or organ for preventative
purposes
Establish a risk of disease prior to removal
3. For this project:
◦ presence of a gene (BRCA-1 or BRCA-2) has been
linked to heightened chances of breast or ovarian
cancer in the future
◦ Rate of POR to avoid developing cancer is
increasing
◦ Justify the permanent removal of an organ based on
the probability (not guarantee) of a disease
complicated and involved decision
4. Defends HOW a decision should be made,
rather than WHAT decision should be made
◦ Not proving that POR is “right” or “wrong”
For this project: focus on improving the
decision-making model
5. Patient has the right to make decision for him
or herself
Obligatory maintenance of autonomy
patient incurs the majority of the impact from
this procedure
6. Physicians and other health care personnel
are morally obligated to fully inform patients
of the impact of a procedure
◦ Both positive and negative elements
Limiting discussion to physiological
considerations violates this premise, and
reduces the ethical soundness of a resulting
decision
7. Patients: external factors blocks
autonomous decision-making
Physicians: limited discussion failure to
provide enough considerations for a truly
informed decision
How can we accommodate both of these
points into the POR decision-making model?
8. Evaluate past medical cases that can inform any
future decisions
Discuss three non-physiological considerations
that can contribute to informed decision-making
◦ Therapeutic benefits
◦ Population-specific concerns
◦ Motivation for decision and maintenance of autonomy
Demonstrate how non-physiological
considerations contribute to the ethical status of
a decision
9. How will organ removal affect patient’s state of
mind?
Case #1: Body Integrity Identity Disorder
2000: Dr. Robert Smith removed healthy limbs
from two patients
◦ Extreme criticism
◦ Patients reported improved quality of life following limb
removal
◦ For cancer patients: removal of a “ticking time bomb”
could alleviate stress of a potential disease
10. Overwhelmingly affects women
Prophylactic mastectomies, hysterectomies
and oophrectomies involve organs that can
be important to a woman’s identity and sense
of self
Case #2: Ashley treatment
◦ Sterilization, “loss of womanhood”
◦ Association between organs and identity is a critical
discussion with a tremendous individual impact
11. Who is the decision being made for?
Discussion required about motivations
behind decision to undergo/not undergo
treatment
◦ Anjelina Jolie op-ed: decision made “for [her]
children’s future”
◦ “The Deferential Wife” phenomenon
◦ Refusal to undergo treatment for aesthetic reasons,
concerns about partner’s perception of organ loss
12. Physiological:
•Gene presence
•Family history
•Extent of cancer
risk reduction
•Surgical risks
•Recovery time
Decision based on these
reasons alone may not be
fully informed = not entirely
ethical; neglects personal
impact
Non-Physiological:
•Residual feelings regarding
decision—”permanence for
probability”
•Personal association with
organs (gendered or
otherwise)
•Therapeutic benefits/risks
•Reason for undergoing/not
undergoing procedure
Decision based on these reasons
alone may not be fully informed =
not entirely ethical; neglects
necessity of procedure
13. Physiological:
•Gene presence
•Family history
•Extent of cancer
risk reduction
•Surgical risks
•Recovery time
Non-Physiological:
•Residual feelings regarding
decision—”permanence for
probability”
•Personal association with
organs (gendered or
otherwise)
•Therapeutic benefits/risks
•Reason for undergoing/not
undergoing procedure
Decision is more informed by
considering both physiological and
non-physiological elements of this
decision = a more ethical decision
REGARDLESS of what decision is
actually made
14. POR is an individual decision, but certain
factors can hinder truly autonomous
decision-making
Past cases can help inform future decision-
making
Multiple factors from multiple angles are
required for the decision to be truly informed
and thought-out a more ethically sound
decision
15. I extend tremendous gratitude to the following
faculty, organizations and funding sources:
◦ Faculty: Dr. Mariko Nakano, Dr. Ryan Nash, Dr. Sigrun
Svavarsdottir, Matthew Vest
◦ Organizations: The Ohio State University Center for
Bioethics, The Center for Bioethics and Human Dignity
◦ Funding:
Pelotonia Undergraduate Student Fellowship, The Ohio State
University Comprehensive Cancer Center
Undergraduate Research Office Summer Fellowship
Ohio State University College of Arts and Sciences Honors
Thesis Scholarship
16. “BRCA1 and BRCA2: Cancer Risk and Genetic Testing.” National Cancer Institute Fact Sheet
Database, 2009. Reviewed 08/05/2013.
Clarke, Aileen, Yu Mei Cheing, Klim McPherson. “Removing Organs ‘Just in Case’ – Is
Prophylactic
Removal of the Ovaries a Good Thing?” Journal of Epidemiology—Community Health. 2006
March; 60(3): 186-187
Gessert, Charles. “The Problem with Autonomy.” Minnesota Medicine, April 2008. Online
Access.
Jolie, Angelina. “My Medical Choice.” The New York Times, The Opinion Pages, Los Angeles.
May 14, 2013. Accessed online, January 3, 2014:
http://www.nytimes.com/2013/05/14/opinion/my-medical- choice.html?_r=0
Levi, Neil. Moral Relativism: A Short Introduction. Oxford: Oneworld, 2002
Moscucci, O and A Clarke. “Prophylactic Oophrectomy: A Historical Perspective.” Journal of
Epidemiology—Community Health. 2007 March; 61(3): 182-184
Smith, Robert. “Amputee Identity Disorder and Related Paraphilias.” Psychiatry. 2004 April;
8(3): 27-30
“The Belmont Report: Ethical Principles and Gudielines for the Protection of Human Subjects
Research.” The National Commission for the Protection of Human Subjects of Biomedical and
Behavioral Research. DHEW Publication No. (OS) 78-0012. September 30, 1978.
Westlund, Andrea. "Selflessness and Responsibility for Self: Is Deference Compatible With
Autonomy?" Philosophical Review 112:4 (October 2003) 483-523.
Editor's Notes
- You can at least present a very simple figure of human body (with muscle, for example) on the right and explain (with your gesture) how invasive such removal procedure can be. Will that be almost the same as common mastectomy or hysterectomy, or even more invasive than that?
You’d better say “There are no objective moral truths (=truths that would be accepted as true and valid not only by the person who judge to be so but also by others).” There are some who claim that you can still claim that there are subjective moral truths (= moral truths that always invariably hold for the person who makes those judgments and act according to them).
But your stance seems to support at least one “universal, objective moral truth” (=an ought-statement that should be accepted by all or the majority of us) that a decision about one’s life, especially when it does not affect other people’s interests, should be ultimately made by the very person who is involved most.
It seems to me that autonomy in POR is important simply because the decision affects the patient most, without causing much harm to any others.
Comparison of physiological vs non-physiological aspects that contributed to the decision
How would non-physiological aspects have changed the decision?
I want to see how your programmatic analysis would work in actual cases.
So, it would be great if you could analyze, here or in the previous slide, HOW Angelina (or some actual patient) actually made her decision, as an example, and summarize your claim about how that decisional process could be improved:
Factors that must have influenced her reasoning:
Existence of cancer-related genes
Prospect of developing cancer at which age, at what probability, how serious that disease would be, how likely and when she could die if she left it intact
Consideration of familial pressure; gender identity; identity as a mother, wife, and an actress and as a person who has this or that social status
Consideration of the positive or negative impact of her decision on the society
What else should one factor in?
