Catholic Approaches to Bioethics – Discussion on June 22 at 3:30PM

A taste on what I am up to when I’m not working on my dissertation or off adventuring… ūüôā

Department of Global Health & Social Medicine at King's College, London

The ‚ÄúReligion¬†&¬†Bioethics‚ÄĚ reading group is reconvening to discuss¬†‚ÄėCatholic Approaches¬†to¬†Bioethics‚Äô¬†on Monday June 22nd 330 pm ‚Äď 5 pm (PLEASE NOTE UNUSUAL TIME), in room 3.1.1 East Wing, King‚Äôs Building, Strand Campus.

 Andrea Berkemeier (Bioethics & Society MA student) has kindly volunteered to share with us her knowledge of Catholic approaches toBioethics and will open the discussion. Take a look at Andrea’s blog here.

You can access the reading list here.

Hope to see many of you there! For inquiries, silvia.1.camporesi@kcl.ac.uk

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Let the dissertation work begin!

Hi folks,

May is the exam season at KCL, but¬†thank goodness¬†that’s an experience that I can say I’ve tried once and don’t have to repeat. ¬†Instead of locking myself away in the library to study for exams, I’ve locked myself away in the library to write papers. ūüôā

D-day is May 14,¬†but in the mean time, I’m also gearing up for full time dissertation work. Today¬†I conducted my very first interview and I’m happy to report: so far, so good! The wifi¬†even lasted for an entire¬†hour!

For those that are interested, I’ve included a segment from (the revised edition of) my proposal that I submitted in February at the bottom of this post. Be forewarned, this has a lot of jargon in it!¬†As I continue to work on my dissertation (due in September) I foresee myself writing some blog posts and will do my best¬†to break it down like I did¬†with my first¬†mtDNA update.

Cheers,

Andrea

Reproductive Counseling (RC) for Adolescents Diagnosed with von Hippel-Lindau

Current methods of genetic testing are most prescriptive for highly penetrant, monogenic disorders such as Huntington’s Disease and Neurofibromatosis (Cecil et al. 2012, p 184-187).  Although each monogenic disease is rare, it is estimated that the global prevalence for all monogenic diseases is 1/100 births (WHO.int 2015).  Since symptoms of some of these monogenic diseases can be quite severe or even lethal, receiving such a diagnosis often influences a person’s reproductive decision-making process.

I would like to focus my research on von Hippel-Lindau (VHL) disease, a lesser publicized monogenic disease caused by mutation in the VHL tumor suppressing gene located on chromosome 3p26-25.  VHL follows a pattern of autosomal dominant inheritance, but approximately 20% of cases occur via a de novo mutation (Frantzen et al. 2012).  It often manifests itself first via tumors on the retina, but may also affect the kidneys, adrenal glands, and central nervous system (Frantzen et al. 2012). The most recent calculation of a VHL patient’s life expectancy was approximately 50 years, but early diagnosis, vigilant surveillance, and proactive management of tumors help reduce the morbidity and mortality of affected individuals (Orpha.net 2015).

Although patients with monogenic disorders such as VHL have more reproduction options than in any previous decade, there are many important ethical considerations that must be considered in navigating these family planning decisions.  These ethical considerations are perhaps most exaggerated for adolescents (age 12-17 years) diagnosed with a de novo mutation. Understanding that none of the patient’s family have the disease and that discussions regarding family planning are often regarded as private and sensitive:

  • How¬†do VHL patients perceive their involvement in RC¬†that they receive as adolescents?
    • Why do adolescents have the counselors that they have?
    • Who is / should be initiating RC sessions with adolescent patients?
    • When considering RC¬†for adolescents, how is the¬†de novo¬†case unique?
  • How are bioethical considerations incorporated into RC¬†sessions with adolescents?
    • What understanding do VHL patients have of the ethical considerations relevant to reproductive options?
    • Do patients perceive themselves to be cognitively and emotionally mature enough as adolescents to understand the technical details / risks / ethical considerations being discussed in RC sessions?
  • To what extent do patients perceive the RC¬†received as adolescents as beneficial for making reproductive decisions?
    • How do patients’ social identities (ie: cultural, religious affiliations) impact their interpretation of the RC¬†they receive?
    • Based on the research, should patients receive RC¬†as adolescents? Why or why not?

 

**Note: these are my¬†revised questions which reflect a slight shift in focus from when I originally submitted my proposal. You’ll notice that I only have one de novo specific question. After 2 months of recruiting de novo participants, I still did not have enough volunteers. Consequently, this past week, I modified the requirements so other people that inherited VHL could participate. I’m still ironing out some of the changes to my research plan, but am quite happy with my current questions. They emphasize the adolescence (more than de novo / inherited) qualifier and thus¬†target the area that I am most interested in investigating.

 

Literature exists on prenatal genetic counselling for pregnant adolescents (Griswald et al. 2011; Peters-Brown and Fry-Mehltretter 1996); the influence of a patient’s cultural (Weil 2001) or religious (Evans 2010) identity on his decision-making process; the parental response to a child’s diagnosis with a rare disease (Picci et al. 2013); and attitudes that VHL patients have toward modern reproductive technologies (Lammens et al. 2009). However, to my knowledge nothing exists at the cross-roads of these topics. Recognizing this knowledge gap in published literature, I would like to study the various forms of counselling that adolescents receive when they have been diagnosed with VHL because I want to find out how these adolescents navigate reproductive decisions in order to understand how to better support their decision making process.

Although my research objective focuses on adolescents, I have specifically chosen to speak with adult patients because adults will have had more time to process what it means to live with VHL, what reproduction entails, and how a VHL diagnosis may influence their reproductive decisions.  This extended processing time will likely make them more willing and potentially less sensitized to discussing these topics. Recognizing that this does not eliminate the risk of inducing psychological stress or anxiety, I will provide participants with supportive resources through the VHL Alliance (VHL Alliance 2015) and clearly state that participants have rights to withdraw from the study via the Consent Form.

I have not specified an age range for these adult participants because reproductive decisions are deeply personal, associated more closely with an individual‚Äôs personal experience than with his / her age.¬† I do not want to assume‚ÄĒbased solely on his age‚ÄĒthat a qualifying adult is (not) prepared to reflect on his experience as an adolescent. ¬†Participation is voluntary and will hopefully be guided by a patient‚Äôs personal comfort level in discussing these topics openly.¬† Furthermore, a wider variety in age may provide me with a better ability to understand how reproductive decisions and / or counselling services shift with a patient‚Äôs age.

References

Cecil, R L, Goldman, L and Schafer, A I, 2012,¬†Goldman’s Cecil Medicine. Philadelphia: Elsevier/Saunders. Print. pp. 184-187.

Evans, J H, 2010, Contested reproduction: Genetic technologies, religion, and public debate, University of Chicago Press.

Frantzen, C, Links, T and Giles, R 2012, ‘Von Hippel-Lindau Disease’.¬†GeneReviews¬ģ. ¬†[Internet]. Available at: http://www.ncbi.nlm.nih.gov/books/NBK1463¬† [Accessed 4 Feb. 2015].

Griswold, C M, Ashley, S S, Dixon, S D and Scott, J L, 2011, “Genetic counselors‚Äô experiences with adolescent patients in prenatal genetic counseling”, Journal of genetic counseling, vol. 20, no. 2, pp. 178-191.

Lammens, C, Bleiker, E, Aaronson, N, Vriends, A, Ausems, M, Jansweijer, M, Wagner, A, Sijmons, R, van den Ouweland, A and van der Luijt, R, 2009, “Attitude towards pre-implantation genetic diagnosis for hereditary cancer”, Familial cancer, vol. 8, no. 4, pp. 457-464.

Orpha.net 2015. Orphanet: Von Hippel Lindau disease. [Internet]. Available at: http://www.orpha.net/consor/cgi-bin/OC_Exp.php?lng=EN&Expert=892.0 [Accessed 29 Jan. 2015].

Peters-Brown, T and Fry-Mehltretter, L, 1996, “Genetic counseling for pregnant adolescents”, Journal of genetic counseling, vol. 5, no. 4, pp. 155-168.

Picci, R L, Oliva, F, Trivelli, F, Carezana, C, Zuffranieri, M, Ostacoli, L, Furlan, P M & Lala, R, 2013, “Emotional Burden and Coping Strategies of Parents of Children with Rare Diseases”, Journal of Child and Family Studies, , pp. 1-9.

VHL Alliance, (2015). Getting Support РVHL Alliance. [online] Available at: http://www.vhl.org/wordpress/patients-caregivers/getting-support/ [Accessed 4 Feb. 2015].

WHO.int 2015.¬†World Health Organization. ‚ÄúGenes and human disease: Monogenic Diseases.‚ÄĚ [online] Available at: http://www.who.int/genomics/public/geneticdiseases/en/index2.html [Accessed 29 Jan. 2015].

Featured image: Internet photo inspired by the signs that students leave on the library computers when they take a break from studying. ¬†Another favorite, akin to my Grandma’s To be Continued: Keep Calm, I’ll Return.

Dearest Darlingest Momsie and Popsicle

Although there hasn’t been any confusion over rooming at Shiz, and I haven’t yet seen Wicked in London[1], this week did bring a lot of excitement with thoughts of Momsie, Popsicle, and other family things.¬†

Last Sunday (March 15) was Mothers’ Day in the UK. After I finished my slight panic that I had somehow missed the whole month of April I learned that, although marketed quite similarly, this “Mothering Sunday” [2] is not associated with the US version of the holiday. ¬†The priest at St Etheldreda’s Parish cleared this up during his homily and also connected this to the 21st C¬†rendition of giving special thanks to our earthly mums as well as¬†Mary, Mother of Jesus.

20150118_093847
St Etheldreda’s Parish, the oldest Roman Catholic church in London. Read more about it at: http://www.stetheldreda.com

We happened upon the Latin mass (far more common here in London than it is back home in the US) complete with choir and string quartet. Music included Eberlin’s Missa brevis in a, Palestrina’s Laudate Dominum, and (holiday appropriate) Johann Michael Haydn’s Ave Maria. As my mom likes to say, this is what I imagine heaven will sound like. ūüôā

On Wednesday evening, after heading to Westminster Cathedral for daily mass, my cousin and I realized we were again celebrating a special feast– St Joseph’s Day. ¬†Although this might make us sound like rather clueless Catholics, this was actually a vigil feast for St Joseph whose feast day is celebrated on March 19.¬†We were again accompanied by beautiful music (this time organ + all male¬†choir) and this time reflected on the gift of¬†dads.

Westminster Cathedral
Westminster Cathedral

Although the mass ran¬†longer than anticipated, we still had enough time to make¬†the English Chamber Orchestra concert¬†at Cadogen Hall (where I attended Joshua Bell’s performance this fall). This opened with Beethoven’s Leonora, featured an Italian soloist (Gloria Campaner) on Schumann’s piano concerto, and closed with Mendelssohn’s Scottish symphony.¬†I don’t know that I’ve ever had such an excellent view of the stage– I could trace¬†the musician’s eye contact¬†and even follow the music on the last stand of cellists. Such a treat!

Following along with the last stand of cellists :)
Following along with the last stand of cellists ūüôā

I also had a few good reminders of the significance of grandparents in recent weeks:

(a) Pope Francis’ address when I was in Rome: “We continue our reflection on grandparents, considering the value and importance of their role in the family.¬†I do so by placing myself in their shoes, because I too belong to this age group.¬†When I was in the Philippines, the Filipino people greeted me saying ‚ÄúLolo Kiko‚ÄĚ ‚ÄĒ meaning Grandpa Francis ‚ÄĒ ‚ÄúLolo Kiko‚ÄĚ, they said! The first important thing to stress: it is true that society tends to discard us, but the Lord definitely does not!… (Continue reading at the¬†Vatican website.)

(b) The recent Social Science, Health, and Medicine seminar lecture on “Grandparenting in Europe and the Health Impacts of Caring for Grandchildren” presented by KCL’s Professor Karen Glaser (who coincidentally has ties to University of Michigan!) ¬†There were a¬†number of¬†really interesting (and quite nuanced) findings¬†discussed. ie: Caring for grandchildren on a ‘part-time’ basis (~15 hr / wk) has positive effects¬†for grandparents’ health and well-being. The research has the potential to shape policy for work /retirement / compensation plans for the ever-growing older population. Since I’m looking at this with younger eyes, I’m curious to see if this could¬†impact decisions around maternity / paternity leave as well as suggested work hours for working mums and dads. (Read more on the¬†Grandparents Plus website.)

(c) Letter writing with my own grandparents. ūüôā

The Valentine letter I received. Included an interesting WSJ article about med schools. :)
The Valentine letter I received. Included an interesting WSJ article about med schools. ūüôā

Sometimes I’m pretty dense, so with just these occurrences¬†this post may not have developed like this. But alas, I also saw Matilda, a special West End treat that I’ve been saving for viewing with my cousin Cecilia and her housemate Hailey. ¬†(So glad the rush tickets worked out– we were the last few in queue to receive the special¬†¬£5 student rate!!)

Cici & Hailey
Cici & Hailey

I hadn’t refreshed myself on¬†Matilda’s plot since I¬†watched the movie and read the book in grade school,¬†but even if I would have, the theatre version¬†deviates a bit from this. For example opening number “Miracle” features the soloists in the children’s Chorus¬†each singing how¬†“my mummy says I’m a miracle / my daddy says I’m a special little guy” regardless of whether they are acting sweet as angels or throwing tantrums at the moment. ¬†This is juxtaposed with Matilda’s mother, shown at the hospital inquiring why¬†she has become 9 months “fat”¬†and whether or not it can be fixed before her dancing competition that evening. The doctor has the ‘joy’ (responsibility) of informing her of the situation:

DOCTOR
You’re nine months pregnant!

MRS WORMWOOD
Antibiotics, or . . . Oh, my good Lord! What about the Bi-Annual International Amateur Salsa and Ballroom Dancing Championships?

DOCTOR
A baby, Mrs Wormwood. A child. The most precious gift the natural world can bestow upon us has been handed to you. A brand new human being! A life. A person. A wonderful new person is about to come into your life to bring love, and magic, and happiness, and wonder!

MRS WORMWOOD
Oh, bloody hell!

DOCTOR
Every life I bring into this world
Restores my faith in human kind.

Each newborn life a canvas yet unpainted,
This still, unbroken skin,
This uncorrupted mind.

Ev-er-y life is unbelievably unlikely.
The chances of existence almost infinitely small.

The most common thing in life is life . . .

And yet every single life,
Every new life
Is a miracle!
Miracle!

MRS WORMWOOD
This is the worst day of my life! [3]

The audience¬†watched with wide-eyed silence. No nervous or obligatory laughter. In fact,¬†the applause at the end of the scene (where Matilda first enters to sing that¬†her parents say she is “a lousy little worm”, “a bore”, “a good case for population control”…) was even a little hesitant as if the¬†mums & dads were questioning whether or not it was a good idea to bring their little tykes to the theatre.

One might argue¬†that this is theatre at it’s best! Inviting the audience into the world on stage!

Perhaps. But it would also make an good¬†topic for a Bioethics lecture or dissertation: how are¬†topics relevant in bioethics (ie: reproduction,¬†pregnancy, child-birth) represented in popular culture or fictional literature? How do these representations impact our understanding of bioethics in ‘real life’?¬†Some suggest that the provide us with warnings (ie: when¬†I mentioned the Island when thinking about Maternal Spindle Transfer.) But we also hear suggestions that we are rather un-impacted by these sources: ‘those are clearly science fiction’ or ‘creating a Gattaca-esque world is not on our radar’, etc. ¬†I¬†already have my final papers in motion for the rest of the year, but this might fuel some free-time reading.

ASB

PS: In Christian traditions, today is Palm Sunday– the beginning of Holy Week, the holiest time¬†in the Church calendar. It’s¬†admittedly an¬†odd thought that I’ll be apart from my family during this time, but celebrating in London presents a unique opportunity beginning with sung mass this evening at St Mary’s in Chelsea. Furthermore, I feel¬†incredibly blessed to be welcoming my boyfriend Ben Brelje¬†to London¬†on Maundy Thursday and then greeting my sister Gretchen and¬†dear friend Joan Campau right after the¬†Octave of Easter is finished.¬†¬†Very much looking forward to playing hostess, but this also means that I’ll be taking a break from writing for a bit. To keep¬†the blog going in the mean time, I’ll try to prep¬†some exclusively picture¬†posts from earlier adventures that I haven’t been able to publish yet. ¬†So as Grandma Berkemeier taught us, to be continued… xx

Footnotes:

[1] One of my favorite musicals! ¬†But since I’ve seen it before in the States, it isn’t as high on my list as other performances.

[2] If you’re unfamiliar with this 4th Sunday of Lent holiday like I was, you can read a quick history on Wikipedia.

[3] I removed some parts of the script for reading purposes. Feel free to check out the whole thing HERE.

Featured Image:¬†Stumbled upon Geraldine Street on a chilly walk¬†back from Vauxhall. This is a toast to the lovely Geraldines in my life: Grandma (Geri) Gaydos as well as the coolest kid¬†sister (Gigi) anyone could ask for. ūüôā Love you both!

Roma, Italia

Last week I had the incredible opportunity to participate in a medical ethics conference hosted by University of Notre Dame Center for Ethics and Culture at their Rome campus. As you may recall, this is the second year that I have been able to attend this medical ethics conference. ¬†I¬†had¬†a bit of deja vu¬†returning¬†to the conference¬†that helped fuel my desire to study bioethics, and more broadly, healthcare from the perspective of the humanities. To¬†be fair though, this had a much different feel since we were just a block away from the Colosseum. ūüėČ

I was impressed¬†with how far I have progressed in my understanding of medical ethics in a year’s time. ¬†Don’t misunderstand this as me thinking I’ve got it all figured out. Far from it! But I much better understood the language¬†of this field and have become a bit more comfortable making¬†bioethical arguments. ¬†I guess my studying is paying off. ūüėČ

I could write a book¬†about what I have taken away from the conference discussions and then fill a few other volumes about tasting¬†delicious Italian food… (click for enlargements + captions)

 

 

…strolling through beautiful¬†museums,¬†piazzas, and villas…

 

…standing in awe as a pilgrim in Rome (and¬†Vatican City)…

 

…but I might have to drop out of my master’s program in order to make time for that.¬†Instead, I present to you¬†a snapshot at the intersection:¬†is spirituality¬†relevant to healthcare, medicine, and the understanding of bioethics?

This sends me back a few weeks ago when I was invited to speak to KCL’s Life Society about palliative care.¬†From their website:

“We exist because universities are important spaces for the exploration of ideas and opinions, and it is important that the Pro-Life voice is heard on campus. Our message is a positive one, it is not about shaming or blaming, it is about discovering the beauty of human life, and protecting it.”

To be honest with you, I was pretty freaked out: why are you asking me? ¬†How am I qualified to speak? To which the student in Life Society replied rather straightfowardly: You study bioethics right? ¬†And you’re going into medicine? Seems like you¬†would have a better idea about the topic than any of us!

It is amazing how much you can learn when you¬†have to ‘teach’. I didn’t just want to speak on my own authority since, despite her encouragement, I honestly didn’t think I had much authority at all. In search of good reference material, I consulted a voice for whom I have profound respect,¬†Ed Pellegrino, whose¬†name¬†I was introduced to little better than a year ago and whose literature continues to be a source of guidance in my study of bioethics.

Though I wouldn’t do justice to ‘summing up’ Pellegrino’s philosophy in a blog post, a central aspect is¬†that:

Cure may be futile, but care is never futile.

The optimal end of healing is the good of the whole person– physical, emotional, and spiritual. The physician, manifestly, is no expert in every dimension. He or she, however, should be alert to the patient’s needs in each sphere, do what is within his or her capabilities and work with others in the health care team to come as close as clinical reality permits to meeting the several levels contained in the idea of the good of the patient. [1]

Considering the fact that a patient’s physical condition¬†often provides the trigger to visit a doctor, it follows naturally that doctors have a reputation of focusing on the physical aspects health. Sometimes they are so focused though, that the patients’ emotional and spiritual needs¬†are¬†forsaken. ¬†Although this applies to all aspects of medicine, I think it is particularly relevant to¬†healthcare at the end-of-life which provided a good framework for my talk with the¬†Life Society. It was also helpful for the conference last week where the keynote lecture was about international perspectives on the euthanasia debate… AND this week’s topic¬†in my Case Studies module: “Ethics at the end of life– the biopolitics of dying.”

This¬†post would get out of control if I tried to summarize all of the points relevant to this topic, so instead¬†I’ll leave you with some important questions that I’ve been mulling over:

  • Does care change when cure is futile? Should it change? How so?
  • Aquinas’ Doctrine of Double Effect is often cited as a reason to prohibit euthanasia. Is there really a difference between [a] giving medication to a person that is¬†intended¬†to give them comfort but has a¬†foreseeable¬†outcome of shortening his life and [b] giving¬†medication that has the intended effect of shortening his life? If there is a difference, how should this inform our ethics and legality of end of life care?
  • Conversations about emotional components of health¬†(and even more frequently, spiritual components of health) are often omitted from¬†clinical encounters.¬†How does this effect patients’ care? ¬†Should physicians be responsible for providing this care? If yes, in what capacity? If no, who (which member of the health care team) would better be able to provide this care?

Until next time,

A

[1] If you have access to a university library or other collection of journal articles, I highly recommend reading this full article! –>¬†Pellegrino, E. (2001). The Internal Morality of Clinical Medicine: A Paradigm for the Ethics of the Helping and Healing Professions. The Journal of Medicine and Philosophy, 26(6), pp.559-579.

Featured image: St Peter’s by night

Are the proposed mtDNA transfer techniques ethical?

Media¬†coverage on “3 person IVF” has admittedly eased up a bit after the House of Commons voted in favor of the proposed mitochondrial DNA (mtDNA) techniques that I talked about in my blog post from last week. However women affected with mitochondrial diseases as well as members of the bioethics community know the debate is far from over.

As the astute reader may have noticed, I deliberately tried to leave any firm opinion out of my previous ‘news update’ from last week. As safe as it may feel to hide behind a news report, one of the most reiterated lessons during my studies in bioethics is that we cannot be afraid to make normative statements. ¬†Translated into syllabus requirements: each week 2 students have to¬†present an ethical analysis of a case study (10 minutes presentation, 10 minutes Q&A).

This week was my turn, and I had the timely opportunity to present on mtDNA transfer. ¬†To add to the excitement,¬†this week we had class at the Nuffield Council on Bioethics—¬†which meant that I was presenting on the turf of people who published a extensive (98 page) bioethical review of these techniques before publishing their endorsement in 2012.

If the PNT and MST techniques are proven to be acceptably safe and effective, on balance it would be ethical for families wishing to use them to do so. [5.2, p88]

After a quick hello, I cut to the chase: “my presentation today will look at a subset of concerns that challenges this conclusion.”

Needless to say, adrenaline was running high.

 

My assessment: UNETHICAL

There are long lists of points to consider in reviewing these new techniques, but since I only had 10 minutes, I tried to focus on areas that I felt have largely been brushed over in the publicized discussion.

 

1. The novel use of the human embryo

For some people‚Ķ the merging of the [pronuclear] DNA from the parents to create an embryo with a unique genetic identity is morally significant. Those holding this view are likely to find [pronuclear transfer] morally preferable [to nuclear transfer] because of the higher moral status afforded to the embryo once this stage of development has been reached. Given, however, that¬†the law permits research up to 14 days after fertilisation where it is ‚Äėnecessary and desirable‚Äô, ¬†and the BMA supports this position, the BMA does not consider this to be a relevant distinction in terms of developing policy for mitochondrial transfer. [4.58, p63]

I acknowledged the¬†obvious question (Is the outcome of mtDNA transfer ‘necessary and desirable’?) but for time sake¬†marked it for Q&A.¬†Instead I focused on the assertion that this point was irrelevant to policy making.

Pronuclear Transfer (PNT) uses embryos in a way that is significantly different from previous reproductive treatments such as preimplantation genetic diagnosis (PGD) with in vitro fertilization (IVF)— a technique used to¬†select embryos to reduce the probability of passing on deleterious genetic conditions.¬† An oft cited argument (ie: Savulesco) in support of such technologies is that it is not logical to think that all embryos should deserve to live because (if we reference natural procreation with sexual intercourse) approximately 3-5 embryos are created and lost for every live birth.

Both proposed mtDNA transfer techniques would utilize this same selection step before implanting embryos in a woman.¬† However, PNT first requires the creation of a ‘donor embryo’ for the specific purpose of harvesting its healthy mitochondria.¬† This embryo is NOT created with the chance of being selected.

Those of you that have seen The Island (2005) in which wealthy people can create a spare body from which they can harvest necessary transplants, may understand why I cringe at this thought.

In evaluating the ethics of novel techniques like this, it may be most appropriate to return to first principles.

Instead of / in addition to asking: How can we match moral value with a quantifiable measurement (ie: number of cells, number of days old)?

Perhaps we ought to ask: Is it ethically acceptable to create embryos for the means of other embryos?

 

2. The increased need for egg donation

When compared with current artificial reproductive technologies (ie: PGD / IVF, donor egg) the proposed techniques require 2x as many eggs– one from the affected mother and one from the female mitochondrial donor.

The BBC reported… ‚ÄúHFEA says people should feel the same about [gamete donation] as they do about altruistic, or living, organ donation.‚ÄĚ HFEA Chair Lisa Jardine was quoted in the Daily Telegraph as saying that she wanted egg donation to become ‚Äėas obvious as blood donation‚Äô. [4.95, p72]

In a society that promotes a woman’s right over her body and sexual organs through widespread use of artificial reproductive technologies, contraception, and abortion (and paid for under NHS!) this assertion that altruistic women donate eggs is dubious.

But this is not just a discussion of societal norms, and the medical risks of egg extraction. (Note: There is ~10-14% risk of ovarian hyperstimulation syndrome for women that have eggs extracted.) This is also a discussion of justice.

We do not consider it appropriate for a regulator to set a limit on the number of times a mitochondrial donor can donate eggs for research or reproduction, other than to protect her from repeated ovarian stimulation. [4.149, p84]

Since 2012, NHS will pay women a flat sum of ¬£750 (+ compensation for travel, childcare, accomodation, etc) per donation cycle. Currently,¬†there is a ’10 family limit’ to prevent the dystopian situation where children produced from donor gametes might unknowingly have children with half-siblings. ¬†Without a limit on the number of donations that women could make, we amplify the concerns that we’ve had about incentivizing kidney donations– it bears a¬†great¬†risk of exploiting the poor.

One interesting analogy shared by a previous egg donor and published by Center for Genetics and Society is that¬†‚Äúsaying that financially struggling young women donate eggs out of the goodness of their hearts is like saying that poor men work in coal mines because they are so concerned that the rich have enough electricity.‚ÄĚ

I give the UK the benefit of the doubt and say that it does not want to end up in a situation where we are shipping in donated eggs from women in impoverished countries where £750 could stretch a lot further than it does in London.  So, are we willing to increase the commodification of our own English women? And mind you, because of our understanding of medical tourism, these English eggs will NOT just serve English people, but the wealthy.

 

3. The role of the affected woman’s voice

[Our son] was 2yr and 4 mths old [when he died of Leigh’s disease]. He had very little quality of life and was very ill and suffered greatly, as did the entire family. These last couple of years have been devastating beyond belief for all of us. We have one healthy daughter who is nearly 5. We would love more children to make our family complete but cannot take the risk this could happen again, so until our gene is found, we are pursuing donor egg options… We would 100% inform any child born of the techniques used, and feel strongly that the child would be grateful to have a genetic link to myself (mother) rather than no genetic link at all (with the donor eggs we are currently using). I believe the impact on the child would be minimal. It only takes me telling them the story of how our son died to make them realise why we would have pursued this technique to ensure another child didn’t suffer this way. We would 100% travel abroad for this technique, we are already going to Spain for our donor eggs… [4.99, p73-74]

I don’t think anyone would debate that this is a powerful account. And a history of patriarchy in medicine demonstrates why it is important to listen to the voice of the patient.

But while narrative accounts are not necessarily confined to rules of rationality, the arguments of bioethicists must be based in reason.  We must recognize these voices as a member of the orchestra, NOT the director.  The implication of letting emotion rule is not just detrimental to our arguments, but also to the affected group. Passion feeds on passion.  If affected women were constantly told that this is unsafe or at least that the safety / efficacy cannot be accurately assessed because of many unknowns, I don’t think we would have statements like: I believe the impact on the child would be minimal.

So my final question: Is it ethical to emphasize an emotional narrative such that sincere risks are made less prominent?

 

Summary:

1. When evaluating the ethical nature of novel biotechnologies, it may be necessary to return to first principles. As demonstrated with the examples of creating donor embryos via PNT and increasing the call for egg donation, relying on previous standards is inadequate.

2. Incorporating the patient’s voice into ethical debate is powerful.¬†I contend that it is important to keep this voice, but we must proceed with much caution lest we let emotion overpower reason.

3. Based on the interplay between the patient’s voice and an ethical assessmentРbioethicists must take responsibility for the endorsements they offer.

I braced¬†myself for a brutal round of Q&A…so I was pleasantly shocked when the majority of¬†responses agreed that¬†I managed to address¬†some important¬†concerns. ¬†I hope by sharing this I have managed to provide some additional points for your consideration.

Over and out.

– ASB

 

Some end notes:

– Featured image courtesy of Silvia Camporesi.

– Many thanks to the people that listened to my musings and helped me refine my arguments over pretzels in the park, through email, and via homing pigeon over this past week. Your support is greatly appreciated!

Pre-Vote News: “Mitochondrial Donation: Is it safe? Is it ethical?”

Last night I had the¬†amazing privilege to attend a debate in the Houses of Parliament regarding today’s vote about whether or not to amend their 2008 Human Fertilisation and Embryology Act (HFEA). The debate was hosted by the Progress Educational Trust (PET), an independent organization that “urge(s) you to vote in favour of the Human Fertilisation and Embryology (Mitochondrial Donation) Regulations 2015.”

I’m rushing this post to press, so please forgive the lack-luster writing quality– I thought you might enjoy an update while the news is fresh. My understanding of biology is helpful, but please understand that I am no expert on this. ¬†All information provided is correct to the best of my knowledge– but if you see some errors, please let me know!

What is mitochondrial disease?

Most info in this section can be double checked on Wikipedia.

  • A set of diseases caused by faulty mitochondria, the “powerhouse” organelle in the body responsible cellular metabolism– converting the food we eat into energy that is usable by our body (ATP — adenosine triphosphate)
  • Symptoms: mostly effects organs that need a lot of energy such as brain (seizures, demintia); heart (cardiomyopathy “heart muscle disease”);¬†muscles (weakness, cramping); ears / eyes / nerves (deafness, blindness, neuropathic pain)
  • Although in 5th grade we learned that all our DNA is stored in chromosomes in the nucleus of our cells that we received from our parents — half from Mom (egg), half from Dad (sperm)– this is only mostly true. It’s more like 49% from Dad (stored in the sperm’s chromosomes) and 51% from Mom (49% stored in the egg’s chromosomes, 2% stored in the egg’s mitochondria). This 2% is exclusively passed through the maternal line. (eg:¬†George’s¬†mitochondrial DNA came from his¬†mom, which came from her mom, which came from her mom… George’s wife will pass on mitochondrial DNA to their children.)
  • While 85% of these mitochondrial diseases are caused by genetic mutations in chromosomal DNA, ~15% of mitochondrial diseases are caused by mutations in the mitochondrial DNA. This subset¬†of mitochondrial diseases is where¬†we focus our attention.

What is mitochondrial donation?

“A type of in vitro¬†fertilization (IVF) that involves conceiving a child using biological material from three people — the child’s parents, plus a mitochondrial donor” (PET briefing).

You may have¬†heard about this in the media as a “3 parent” embryo. ¬†a somewhat misleading¬†description since parents are not just defined by genetic relations. (Think about parents of adopted children.) ¬†Even if emphasize the importance of genetic lineage,¬†the embryo would only receive ~2% of its DNA from the “3rd parent” (the woman¬†who donates mitochondrial DNA). Remember: 98% of the DNA¬†is from the chromosomes of the egg & sperm.

The HFEA is proposing two specific techniques:

1. maternal spindle transfer (MST)

Mitochondria from a donor egg is transferred to the Mom’s egg. The Mom’s egg (now containing healthy mitochondrial DNA from the donor) is then fertilized with Dad’s sperm using IVF techniques.

2. pronuclear transfer (PNT)

Mom’s egg is fertilized with Dad’s sperm using IVF. A donor embryo is formed using donor egg and potentially (though not necessarily) donor sperm. The healthy mitochondrial DNA from the donor embryo is transferred to the embryo formed from the Mom’s egg and the Dad’s sperm. This technique results in the death of the donor embryo, the ethics of which are briefly outlined below.

See the HFEA’s website for more info on these two techniques.

What are the main ethical considerations?

Lots of things to consider! But for time sake (I have to run to class!) I’ll talk about two:

1. Is mitochondrial transfer safe?

Again, this is contested. Based on the debate yesterday, my understanding is that these techniques have¬†been researched for 30+ years. The¬†majority of this time has been spent with animal research, but the last 5 years have used human embryos. The results are promising, but we wouldn’t understand the effects until¬†it is tested in humans.

This technique is unique in the fact that it changes the germ line. It is very difficult to predict the social and biological harms / benefits of this type of alteration. There have been a few experiments in humans that use similar techniques, (US — late 1990s, China — 2003) but the results have either been unsuccessful or indeterminate.

Note: In the US, the FDA has NOT yet approved mitochondrial donation for clinical trials. This takes for-eh-ver, so even if / when this advances to the stage of clinical trials, it will be a long time before it is available to the general public.

2. What is the moral status of an embryo?

A highly contested question. According to UK parliament (2002) the embryo has some non-negligible¬†moral value that is less than the moral value of person after birth. This matches their policy that permits the use of¬†IVF to select against severe genetic disease and states that embryos may be used for research purposes only when they are¬†‚ȧ 14 days¬†(“early embryos”).

One of the strongest voices on the other side of the fence is the Catholic Church, which states that “human life must be respected and protected absolutely from the moment of conception” (2270).¬†Contrary to popular belief, the Catholic Church does encourage “research aimed at reducing human sterility” (2375). However, it opposes “techniques involving only the married couple… that dissociate the sexual act from the procreative act” (2377 — eg: artificial insemination / fertilization) and strongly opposes “techniques that entail the dissociation of husband and wife, by the intrusion of a person other than the couple” (2376). ¬†This understanding matches the Catholic teaching that sympathizes with infertile couples but maintains that a child is gift–¬†there is no “right to a child” (2379). ¬†As such, the Catholic Church does not support the proposed changes– especially PNT which creates and destroys the donor embryo, a means to the end of creating a healthy embryo.

The vote will take place this afternoon (London time) so stay tuned to the news! ¬†Based on the views exchanged at the debate yesterday and the fact that IVF is permitted in the UK with costs covered under the National Health Service, I’m betting that this proposal will pass at least in part– definitely for MST, but perhaps not for PNT because of the ethical reasons explained above.

And if you made it through that whole post, here are some photos for your enjoyment.

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.