Sounds of Silence

I’m happy to report that this week was filled with interesting lectures* and other events…. and an extra few hours on the dance floor. ūüôā Though my skills don’t¬†come close to those of the¬†dance.addict@mail.com (no joke) who signed in¬†before me, I am quite enjoying the (non-competitive) classes with the KCL Dance Society. ¬†My hamstrings can attest to the fact that¬†I haven’t done so many kicks since I was a majorette (twirled baton in marching band) in high school.

Dancing, running,¬†or even just walking around town– it is rather simple to take the ability to participate in such activities for granted. I know I’ve mentioned this before with respect to navigating numerous flights of stairs at tube stations without lifts or escalators, but I think it is worth revisiting.¬†This week’s reminder came to me¬†on Guy’s Campus, the science / medical campus. ¬† Since I don’t have classes on Guy’s Campus, I don’t frequent it as much, and thus my decision to find a¬†bathroom quickly became an adventure in the basement of the¬†Hodgkin Building: a maze of sloped corridors presumably designed to accommodate gurneys. ¬†Despite KCL’s good intention of hanging signs (TOILETS —> ) I still couldn’t manage to find the regular facilities. ¬†Having spotted a empty handicapped-accessible room with 1 toilet, I decided I didn’t need to pick a fight about¬†about the poor¬†signage (which didn’t actually¬†direct¬†people to this¬†singular¬†toilet).

Now, I’m sure most of you have entered a handicapped-accessible stall someplace: it’s most notable feature is its¬†large size that can accommodate a wheelchair or other similar medical device. ¬†Hospital bathrooms usually add in a few bars that the patient and / or medical assistant can use for support. This bathroom not only had those features, but also (most memorable for someone who is 5’10”)¬†had¬†the sink and hand dryer at levels that would be easily usable by someone who is sitting. ¬†The engineer in me was taking stock of these details: “Nice! Someone was really thinking when they designed this!”¬†But I¬†couldn’t help but think of the countless¬†other public bathrooms that I had visited where the design seemed to forget that people who are confined to¬†wheelchairs probably have the same desire to wash and dry their hands as people that are able to stand. ¬†I’ve never had to navigate a public restroom whilst in a wheelchair, though I think that if I ever had to design one, that is definitely a test I would want to apply.

In Engineering design courses, we are constantly reminded to envision our product from the user’s lens.¬†For example,¬†my senior design team was tasked with building a hearing screening device for newborns in¬†South Africa. Our motivation was rooted in the understanding that most cases of hearing loss could be ‘corrected’ if¬†deaf children who were diagnosed¬†and given¬†treatment (eg: hearing aids, extra¬†language development instruction, etc) before critical language development years; children who were diagnosed after¬†this period of critical language development (typically identified by unresponsiveness to¬†loud noises or delayed ability to speak) would never attain¬†the speaking proficiency of their normal-hearing peers. ¬†¬†Though I dare say my team did a pretty good job of accounting for¬†many of¬†these nuanced factors that can make or break the successful implementation of a medical device into a community, I don’t think we ever considered whether the parents would actually¬†prefer¬†to have a deaf child.

I mentioned this topic in a post at the beginning of last term, and after months of sitting with this idea, it still doesn’t sit well with me. ¬†But a marked sign of development is the fact that I better understanding¬†the arguments surrounding the case and can articulate¬†some of my own perspectives that amount to more than ‘an odd feeling’.

Another marked sign of progress is my improved reading speed.** ¬†In between my assigned readings for my classes, I’ve managed to read some more about this case of choosing deafness in the book that our program director (Dr Silvia Camporesi) recently published– ¬†From Bench to Bedside, to Track & Field: The Context of Enhancement and its Ethical Relevance. ¬†Despite the fact that my teammates and I didn’t consider the possibility that some people would prefer to have a deaf child, Silvia notes that:

“Empirical research suggests that deaf people often have a degree of preference for a deaf child, and a rather smaller number would consider acting on their preference with the use of selective techniques. [***See references below.] It turns out that such parents do not view certain genetic conditions as diabilities¬†but as a passport to enter into a rich, shared culture” (p 54).

THAT is certainly some food for thought for engineers trying to implement hearing screening devices.

Last week we were invited to attend Silvia’s book launch.¬†This was pretty exciting since the last book release that I can remember attending was for Harry Potter 7, and¬†no, J K Rowling did not make a guest appearance at Meijer.¬†This intimate event was shared with a good showing from our Social Science, Health, and Medicine department as well as Silvia’s husband & parents who made the trip in from Italy!

At the book launch with some of my classmates. Photo courtesy of Silvias mom. :)
At the book launch with some of my classmates. Photo courtesy of Silvia’s mom. ūüôā

Considering the theme of my musings, I was excited to learn about and attend a Deaf Arts Festival hosted in London this past weekend. (Photos courtesy of Silvia.)

I managed to catch the last part of the student theatre production. Although they provided some super-titles on the background screen, the main method of communication was British Sign Language and a bit of loud, low frequency sounds that you could feel. ¬†Perhaps my favorite part was the silent round of applause at the end of the show– something that looks quite similar to jazz hands or spirit fingers at a basketball game. ¬†I can’t say I understood everything (I think they were performing a¬†modern interpretation of Hamlet?) but it certainly provided some good¬†think time.

And now I’ll leave you here to give you some think-time of your own.

Cheers,

Andrea

*I’ve saved¬†my notes from one of my favorite lectures this week which gave a philosophical response to “What does it mean to love a person?” ¬†If I can time this well, I might be able to release this mid-February… ūüėČ ¬†Stay tuned!

**I suppose that comes with practice, and goodness knows that those skills had become quite rusty during my years at UM. ¬†Reading a biotransport textbook (30% text, 70% equations) is vastly different than reading a paper¬†about withholding blood transfusions from Jehovah’s Wittness children.

*** References:

Middleton, A, J Hewison, and R F Mueller. 1998. ¬†“Attitudes of Deaf Adults Toward Genetic Testing for Hereditary Deafness.”¬†American Journal of Human Genetics¬†63 (4): 1175-1180. doi:10.1086/302060

Stern, S J, KS Arnos, L Murrelle, K Oelrich Welch, W E Nance, and A Pandya. 2002. ¬†“Attitudes of Deaf and Hard of Hearing Subjects Towards Genetic Testing and Prenatal Diagnosis of Hearing Loss.”¬†Journal¬†of Medical Genetics¬†39 (6) (June): 449-453.

Featured image: also from the Deaf Arts Festival. Photo courtesy of Silvia.

Sex Selection, Organ Allocation, and Other Controversial Topics

As promised, I now return to the continuing story of my curriculum. ¬†I’m going to focus on Foundations of Bioethics and Society (FBS) this time, but you can get an idea of what I’ve been up to in my other course (Foundations of Social Science, Health, and Medicine) by looking at the featured picture above: that was my reading assignment for last week. ¬†Needless to say, I’m getting acquainted with the libraries… ūüôā

In Foundations of Bioethics and Society (FBS), we root ourselves in ethics (philosophy) and then apply those ethics to biomedical questions.  Next semester I will be taking an entire course on case studies, but for now we just receive taster themes to stay oriented.

We’ve quickly covered (or for those with a background in philosophy– reviewed) core theories such as Utilitarianism, Consequentialism, Cosmopolitanism, Kantianism, Andreaism… (Ah ah ah! ¬†Testing you… ūüėČ ) ¬†For a new-kid like me, this reading was quite dense.

To help me understand, I picture these theories on a¬†number line where you have the extreme cases (-1, +1) but you also have the indefinite¬†amount of¬†theories that fall somewhere in this spectrum (… -0.0009, -0.0008,… +0.0008, +0.0009…)

Take for example the following set: Moral Realism, Moral Relativism, and Value Pluralism: *

  • Moral Realsim — There¬†are right things, and there are wrong things. This is a fact. ¬†Always. ¬†When we look at history and see that things are wrong that we used to think were right (eg: slavery) we identify this as moral progress; the core morals never changed, we¬†just have a better understanding of them.
  • Moral Relativism ¬†—¬†Defining something as right¬†or wrong depends on a lot of different factors (eg: the time period, location, the group that is being considered, etc.) ¬†Moral progress doesn’t exist. ¬†Just because I define something as right, you could define it as wrong and we could both still be correct. ¬†Situation-based understanding is a must.
  • Value pluralism — Some things will¬†always be¬†right /¬†wrong (like moral realism!), but some things depend on the time period, location, culture, etc. (like moral relativism!) ¬†But how can this be so?! ¬†You identify things as right or wrong by considering different values. ¬†For example, the¬†JUST¬†response is X; the MERCIFUL¬†response is Y. ¬†In some situations¬†justice is more important than mercy… in other situations it is the opposite.

In a classroom with students from around the world, with various educational backgrounds and extra-curricular life experiences, we are able to find people with home-bases¬†set up throughout¬†the entire spectrum. ¬†While thrusting your hands up and shouting Tradition! seems quite enticing at times, it is not altogether beneficial in a classroom. ¬†Instead,¬†we take a lesson from Tevye and practice contemplating what it is like ‘On the other hand’. ¬†This doesn’t mean we always change our minds– in fact, we often do not– but the idea, just as it was in¬†engineering school, is that¬†we will learn to think.¬†

So what are we thinking about?  The themes presented with lecture (and incorporated into our reading assignments and formal discussion sections) so far have been:

1. Sex selection

Is selecting the sex of your child ever ethically acceptable?  If yes, under what circumstances?

Important notes:

  • When discussing¬†“sex selection” I am referring to pre-implantation embryo selection. ¬†This Wikipedia article¬†gives general info about¬†the most common technique that I’ll¬†discuss– in vitro fertilization / preimplantation genetic diagnosis, or IVF/PGD. Note, to accept embryo selection of any kind as being ethically sound practice, you also have to accept in vitro fertilization as being an ethically sound practice– an admittedly contested practice.
  • “In the UK, sex selection is only allowed to avoid having a child with a serious medical condition; it is illegal to carry out sex selection for social reasons (e.g. for family ‚Äėbalancing‚Äô)” ¬†(cite: UK’s Human Fertilisation and Embryology Authority)
  • In the US, sex selection is allowed– not only for selecting against serious medical conditions, but also for family balancing. ¬†However, “the Ethics Committee of ASRM ‘recognizes the serious ethical concerns’ that gender selection raises and ‘counsels against its widespread use'” (cite: American Society for Reproductive Medicine¬†via HRC Fertility Clinic’s GenderBaby).
  • What is meant by so-called “family balancing”??? ¬†Good question. ¬†“Family Balancing is the term for gender selection done for the purposes of achieving a more balanced representation of both genders in a family. For example, if a couple has a son and desires a daughter, or there is an otherwise unequal representation of both genders among current siblings, the couple would be appropriate candidates for Family Balancing at GIVF” (cite: Genetics and IVF Institute).

2. Shortage of organs donations

Is there an ethical market for human organs?  What are the ethical implications of an opt-out organ donation program?  Should people who have participated in activities that are detrimental for their health (eg: smokers) be removed from organ transplant wait lists?

Important notes:

  • Wales will be adopting an opt-out program beginning in December 2015. ¬†Read more HERE.
  • Since there are a limited number of organs available, for every person A that receives a transplant X, person H (the next person in line that is a proper match for the available organ X) will go without. ¬†In some cases, this means that person H will die waiting for the next good match.
  • The match system is especially a challenge for pediatric patients. ¬†Take lung allocation as an example: as indicated in the figure below, pediatric candidates¬†will only be at the top of the list for pediatric lung donations. ¬†Makes sense right? ¬†(The closer the match, the greater the probability there is for a successful implantation.) ¬†Except when you¬†consider that the number of pediatric lung donations is dwarfed by the adult lung donations. ¬†Thus, being placed into the¬†queue for pediatric lung¬†donations is a lot like receiving a death sentence. ¬† In¬†2013 (surrounding¬†the case of Sarah Murnaghan) it became possible for pediatric candidates to formally appeal to be placed in the “adolescent” category, thus increasing their chance of receiving a much needed transplant. ¬†You can read a brief background to this change in allocation HERE.

 

Pediatric Organ List
Figure from Organ Procurement and Transplantation Network (part of US Dept of Health & Human Services)

In case it isn’t obvious, I am quite interested in pediatric organ allocation¬†and am considering making this the focus of my final paper for the FBS module. ¬†Are these changes for the better? How receptive should governing bodies (eg: US Dept of Health & Human Services) be to personal pleas¬†to change a patient’s order in the transplant queue? ¬†Considering the influence that we have on¬†governing bodies,¬†what role should we¬†play in participating in these types of personal pleas (eg: social media campaigns)?

Many thanks to all the people involved in organizing and participating in the Notre Dame Medical Ethics Conference (March 2014) where I was first introduced to some of these questions and concerns regarding pediatric organ allocation.

3. Disability and Enhancement

This is actually the name of a module that I will be taking next semester, but we’ve already started conversations on this topic through the Bioethics Film Screening Series that my program¬†jointly hosts with the Department of Film Studies. (Read about this series¬†HERE.)

Last Tuesday we viewed Mandy, a film made in 1952 about the challenges faced by a couple trying to provide the best care for their deaf daughter.  Since my senior design team worked on developing a hearing screening device, I was rather well versed on the topic of hearing loss.  Even still, I learned SO much from the diverse perspectives provided by my Bioethics peers as well as a professor of Film Studies.

Something that felt completely new for me was the question of selecting¬†for¬†deafness. ¬†What?! ¬†you may ask (as seems to be the only response I’ve received when introducing this topic to someone.) ¬†Yes, you read that correctly: specifically selecting an embryo that has hearing loss¬†coded in their genes. ¬†This¬†NY Times article gives a good introduction to this concept of selecting for disability.

From the Oxford English Dictionary
From the Oxford English Dictionary

My questions: In an age¬†that hedges classifying individuals as “disabled”,¬†how do we (and how ought we) understand normal¬†health and the role that medical¬†professionals have in providing healthcare? ¬†If selecting for deafness is ethically sound, can we also support decisions to select for other conditions that are historically viewed as being on the negative end of the “spectrum”¬†(eg: blindness, color-blindness, etc). ¬†What about conditions like Trisomy 21 (Down’s Syndrome)?

This last question stemmed from a discussion I was sharing with a classmate as we discussed the ethics of testing a fetus (via¬†amniocentesis) for Down’s Syndrome. ¬†The rates of “elective pregnancy termination” after prenatal diagnosis with Trisomy 21 range¬†from 50-90% depending on the country, year, etc that the study was conducted. Despite the eugenic-alarm that this type of statistic activates, my colleague defended the stance that access to this prenatal diagnosis should not be limited: information is a prerequisite for making well-informed decisions. ¬†People with Down’s Syndrome are wonderful, loving people with dignity that must be respected AND (even though it is not well publicized in the media) there are¬†families that specifically¬†opt to adopt children with Down’s Syndrome. ¬†(See the website for the National Down Syndrome Adoption Network for more information.)

 

Whew long post! And not many pictures!!

I think that should give everyone enough to chew on for the next few days. ¬†I recognize that these are not easy or comfortable topics, but they are important. If there is something in here that gets you fired up– whether that be in the positive or negative sense– great. ¬†Now do something with that fire! ¬†At the very least, start educating yourself on what is out there by skimming through the links that I’ve included throughout this post. ¬†(I tried my best to find credible sources that were still easy to digest even if Bioethics isn’t your main squeeze.) I know think-time is precious, but just try to ponder some of these ideas as you drive to work, prepare lunch, or brush your teeth before bed. ¬†Though the world of bioethics does not always feature rainbows and kittens, for an engaged citizen to plead apathy toward¬†such topics is at best irresponsible.

ASB

*¬†I had some familiarity with these specific theories¬†before beginning my program but for all intensive purposes, I’m the new kid on the block when it comes to philosophy. ¬†For those of you that are also new to this, I will do my best to distill this down to bite-size¬†chunks. Keep in mind that I am just beginning to study this AND¬†any time you “distill” you eliminate nuances. ¬†If you are interested in learning more, a great online resource is the Stanford Encyclopedia for Philosophy; it’s kind of like the Wikipedia for all things philosophy.

Transfixed

On Saturday, I made a plan to go to the Borough Market, National Gallery, & National Portrait Gallery.

Borough Market

National Gallery

After the market, I took the train up to Charing Cross and walked to Trafalgar Square to visit the National Gallery & National Portrait Gallery.

I was lucky enough to arrive just as a free tour was starting at the National Gallery. ¬†Since I am now living here instead of just visiting, it is really awesome to just stop in a gallery for an hour or two. That being said, it was a little bit unsettling to see how people were¬†perusing the gallery. ¬†I¬†don’t proclaim to be an art¬†expert,¬†but I can tell the difference between a gallery and a zoo…

The¬†former SWE president in me started brainstorming methods for improvement. Should the require you to participate in a tour? Or maybe charge a small admission fee to¬†encourage people to be more conscious about their visit? ¬†Or maybe just be more vigilant about chastising people for inappropriate behavior? ¬†I was developing my remodeling plan until the end of the tour when the guide came up to one of the women standing behind me. ¬†I hope my descriptions were ok for you, the guide said. Was this some sort of critic? I did a bit of obvious eavesdropping and soon realized the woman being addressed was holding a¬†white cane. ¬†While staring at people is generally not seen as polite behavior in the US culture (and as far as I can¬†tell this rule remains true in London) I couldn’t help my eyes from widening: (1) in embarrassment for my train of thought that tried to limit access to this treasure , and (2) in amazement that such concerted efforts were being made to support art education for all.

Curious about¬†the Gallery’s¬†endeavor to make art accessible to everyone, I did a bit of research to find their Disability Equality Scheme¬†(support for deaf, blind, physically handicapped visitors) and their mission to provide “the¬†widest possible access to¬†the national collection of paintings in the Western European tradition¬†to around 1900, which it houses, conserves and displays.” ¬†My fascination with¬†this gallery runs much deeper than the beautiful artwork.

The Portrait Gallery was just around the corner, and I spotted St Martin in the Fields, the name sake of the Academy of St Martin in the Fields, the chamber orchestra directed by one of my favorite violinists, Joshua Bell. ¬†I had the amazing opportunity to hear them perform Beethoven’s violin concerto as part of the UMS series in 2012 and will be keeping an eye out for tickets this year. ūüôā

St Martin in the Fields
St Martin in the Fields

National Portrait Gallery