The Unusual Suspects: Wedgwood Pottery, The Canals of England, And The Death of God

God is dead…..And we have killed him.

– Friedrich Nietzsche

Nietzsche’s madman infamously proclaimed the demise of God in his 1882 work The Gay Science. Nietzsche was presumably dramatizing the idea that belief in God and the pervasive influence of Christianity in Europeans’ daily lives had ebbed throughout the 19th century.

Grant me permission to sidestep the heated debates among deists, theists, scientists, atheists, and all the other “-ists”  about the existence of God and let me indulge in a bit of fanciful post-mortem speculation about the real culprits responsible for the Supreme Deity’s untimely death – the canals of England and Wedgwood pottery.

I want to be clear up front – part of my theory is unabashedly lifted directly from Simon Winchester’s excellent book The Map That Changed The World. The  speculation about the role of Wedgwood pottery is my unique contribution.

Throughout the Middle Ages and up until the 18th century, much of the Christian world believed in the literal interpretation of The Bible. In this view, the Earth was created at 9 AM on a fine Sunday morning on October 23rd, 4004 BC, as calculated in 1650 by James Ussher, the Anglican bishop of Armagh in Northern Ireland.  By the start of the 18th century, the annotated pages of the King James Bible included Ussher’s dating for every biblical event. For example, a good Christian could open the Bible to the story of Noah and in the margins read that the Great Flood began on the 17th day of the second month in the 600th year after the creation of the Earth.

But the supremacy of the Bible soon came under scientific scrutiny. The late 18th century saw the rise of England’s Industrial Revolution, the shift from cottage based industries and farming to large factories that manufactured textiles and other goods on a previously unimagined scale. England suddenly needed huge quantities of coal to be transported quickly and cheaply, which led to the construction of a complex network of canals for carrying coal on horse-drawn barges from the mines to the factories.

Canal construction required the land to be surveyed to determine the best route for the waterways. William Smith, a key figure in the history of geology, surveyed the canals in the Somerset coalfields. As Smith studied the layers of earth in the coal pits, he realized that these strata could be identified in the same order in widely separated parts of England and that each stratum contained a unique set of fossils arranged in a predictable and orderly fashion from oldest to youngest. Smith eventually produced the first stratigraphic map of England, which provided  graphic evidence that the Earth must be considerably older than Ussher’s 6,000 year estimate. The first cracks started to appear in the rock solid Biblical view of the world.

The crippling blow to the literal interpretation of the Bible had its seed planted in 1769 when Josiah Wedgwood opened Etruria, his great pottery factory near Stoke-on-Trent in Staffordshire. Wedgwood realized that canals were a more cost-effective means of transporting clay to his factory and a far safer means of transporting his fragile products to their sales outlets. Wedgwood convinced Erasmus Darwin, his good friend and the eventual grandfather of Charles Darwin, to join him in investing in the construction of a  system of canals running from the countryside to major cities.

These shrewd investments led to the Wedgwood and Darwin families becoming among the wealthiest in England. Charles Darwin’s father, Robert, united the families’ fortunes when he married Susannah Wedgwood, daughter of Josiah Wedgwood. Charles himself further entwined the wealth of the two families by marrying his cousin Emma Wedgwood.

This vast wealth directly paid for Darwin’s Beagle explorations, and also allowed him to avoid the shackles of employment and to lead the leisurely life of a wealthy country gentleman as he spent decades meticulously developing his theory of evolution. As Darwin acutely understood, the 1859 publication of  The Origin of Species shocked the world, and still generates intense debate today. Whatever side one takes on these arguments, Darwin’s work shook many peoples’ beliefs in the literal interpretation of the Bible and the role of the Christian church in their perception of the world around them.

As Gil Grissom and the CSI crew know, solving a crime can be complicated and require making some not-so-obvious connections.

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Cross-Cultural Genetic Services

I have enjoyed the opportunity to be a part of this wonderful blog as an author.

I am leaving for Kenya where I will serve as a Peace Corps Volunteer for 2 years. I will serve as a Deaf Educator at a school for the deaf. I will also be a Behavior Communicator and will work with HIV/AIDS prevention within the deaf/hard-of-hearing community in Kenya.

I will also have a 3rd project which can be anything we want to do. Since genetic counseling is one of my passion I want to make my 3rd project something that has to do with genetic counseling. I would love to hear your input regarding genetic services in different countries and what we can learn from it.

While I am stepping down from this blog as an author, I do hope to continue to blog as a guest providing I have Internet access in Kenya.

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My Mind’s Made Up

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Genetic Counseling and the Disability Community: A Cautionary Tale

A commentary by Anne Madeo, Barbara Biesecker, Campbell Brasington, Lori Erby and Kathryn Peters in the August issue of the American Journal of Medical Genetics (The Relationship Between the Genetic Counseling Profession and the Disability Community) is going to raise some hackles because it takes on the most sacred cow in genetic counseling: the belief, bordering on dogma, that genetic counselors are good.  Not just good as in the absence of bad, or good like ice cream and lazy Sundays, but good in the dare-I-say religious sense.  Good-doing.  Doers of good.  Beyond well-intentioned, because well-intentioned suggests that one might do the wrong thing by accident.  Genetic counselors are trained good-doers, there to protect and rescue patients from the less finely calibrated ministrations of other medical professionals, particularly doctors.

The perfidy of doctors is sometimes a corollary to the gospel of genetic counseling, in which it is stated that genetic counselors do good.

But I digress.  And while I am digressing, let me hasten to add that I think genetic counselors are as nice as group of people as I have ever known.  And I am not just saying that because I don’t want to get nasty looks at the next NSGC conference; I mean it.  Genetic counselors are as a rule neither cynical nor uncaring, and I have found them to be absolutely dedicated to doing right by their patients.

But you can’t do right by all people all of the time, not if you believe that doing right means supporting them in whatever they decide.  You can’t.  Let’s say a woman carrying a fetus with Down Syndrome arrives in your office.  So now you have a tightrope to walk.  Because if she decides to terminate but has the least degree of uncertainty or guilt, any positive remarks you make about DS kids (They are cute, aren’t they?  And the new research is promising…) is likely to echo in her ears as a reproach.  And if she decides to keep the baby, any negative remark you make about DS kids (They do have a lot of medical issues one should really mention…right?  And lots of people in her shoes would terminate…) is likely to be remembered as proof that the genetics people thought my baby – my baby! – should have been aborted.

Genetic counseling – if it was easy, everybody would do it.  Madeo and company don’t attack genetic counselors, nor do they underestimate the complex balancing act involved in this counseling scenario.  They do suggest that the few available studies suggest that counselors and the NSGC have been more involved with protecting women’s rights to terminate and reassuring those that do, rather than protecting the rights and interests of persons with disabilities.  Of course, this is in part because it is abortion rights that have been under siege.  They quote Arthur Caplan from 2009, advocating activism in a phrase that syntactically ties the anti-abortion movement with Naziism:  “If counselors do not speak up on behalf of their clients, who will?”  True, the authors say, and yet, they suggest– is it hard to understand that many parents of children with DS feel their babies are under siege as well?  There aren’t as many as there used to be.  They call that threatening.  We call it success (yes we do.  Be honest.  Improving our prenatal screening is not about giving parents the chance to know in advance that they are having a kid with DS.  And if it was, insurance wouldn’t pay for it).  So they would like to balance the equation. “If counselors do not also speak up on behalf of clients who choose not to terminate a pregnancy, then who will?” the authors ask of us.  “If counselors do not also speak up on behalf of clients with disabilities, then who will?

A response by the NSGC for the most part focuses on rebutting the charges that either the organization or its members fails to recognize its special obligation to those affected by genetic syndromes and genetic disease.  NSGC President Karin Dent does an admirable job detailing the position statements, collaborations, educational outreach efforts that document our commitment to people with disabilities.  We are trying, the thing says!  We do so much!  But there is something about this primarily defensive posture that denies the essence of the problem.  Defensiveness is our Achilles heel.  “I’m just a soul whose intentions are good” sings Bob Resta in his accompanying commentary, “Oh Lord, please don’t let me be misunderstood.”

As Resta correctly suggests, defensiveness over the issue of whether or not we are fair may be leading us to miss the central issue of this drama: DS births aren’t just going down, they are going down selectively.  Some communities and demographics have better access to screening and intervention; others are more willing to use them.  This is true of DS today, as it will be true of many other screening programs in the future.  The very things that in our lifetimes have been the sort of thing that can happen to anyone (there but for the grace of god go I…) are becoming the sort of thing that only happen to “some people.”

“Imagine yourself in our shoes,” writes Patricia Bauer, the mother of a girl with DS, “as the question hangs in the air at neighborhood gatherings, at the park, at the supermarket. ‘‘Didn’t you have the test?’’ someone asks, eyeing our child’s face with a raised eyebrow that seems to betray surprise, curiosity, disapproval…. If you had been a responsible parent, they seem to say, wouldn’t you have exercised your legal right to abort…”

Lurking in her words is a sociological issue of enormous proportions, one where we may exercise our board-certified ability to do good, if we can stop making the issue all about us.

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Priorities For The Genetic Counseling Profession For The Next Decade

Lately I have been thinking about the future of genetic counseling and where the profession should be heading. What with busy work schedules, institutional budget crises driven by a shaky economy , and the emotional burdens of caring for our patients, it is easy to lose track of the bigger picture of what the genetic counseling profession should be striving for. So, over a beer (perhaps two), I decided to step back from the craziness of the workaday world and put together some thoughts about where I think our profession should be headed in the coming  years. The order of this Top Ten List does not reflect priority. In earlier drafts, I re-ordered the items so often as to destroy any test/re-test reliability. They are all critical, I guess.

Read the list. Argue some points with me. Think it over. Venture your own ideas in the Comments section. Have fun with it.

A “Top Ten” Agenda For The Genetic Counseling Profession For The Next Decennium

1)    Work on our relationship with, and develop a better understanding of how we are perceived by, people with disabilities, and their advocates.

2)    Integrate our services into the evolving landscape of widely available genetic testing for many common and rare genetic conditions.

3)    Develop, conduct, and publish a coherent research agenda about the process and outcomes of genetic counseling so we can effectively deliver genetic counseling in meaningful ways to improve the medical, psychological, and social well-being of our patients.

4)    Ensure that genetic counselors are covered providers in all pubic and private insurance plans so that every patient, regardless of socio-economic status, has access to our services.

5)    Educate ourselves to stay up to date in the rapidly growing field of genetic medicine, and encourage personal and professional growth.

6)    Develop and grow our counseling skills to ensure that all patients receive psychologically, emotionally, and culturally sensitive genetic counseling.

7)    Increase the demographic diversity of the profession to reflect our patient population.

8)    Increase the professional diversity of genetic counseling jobs and skills so that we are an integral part of all relevant aspects of clinical care, as well as policy development and implementation, laboratory medicine, academics, government services, and research.

9)    Encourage active involvement in our professional organizations (NSGC, ABGC), and with our relationships with other professional organizations, to ensure that we have a public face that reflects our priorities and that advocates for the profession.

10)  Maintain the highest quality in our training programs to ensure that the profession continues to be supplied with bright, thoughtful, ethical, empathic, and well-educated individuals.

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Genomics and the Social Web: A Timeline

(As posted on www.hernaturehisnurture.com)

I thought I’d share this timeline that I put together recently for a presentation on the social asepcts of genomics. Although clearly not an exhaustive list of events, I still find it interesting to see the major milestones in genomics side-by-side the evolution of the social web.  Not only does this provide a potential explanation for why the genomics industry has developed the way that it has, but it helps to illustrate the relationship between genomics and social media: openness, connectivity, patient autonomy and citizen science.

 

(click on image for larger view)

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“Family History In Times of Siege (1945)” by Robert Resta

A full schedule, impatient with patients,

committing the mistake

of heading straight to

matters of fact

But they must tell their stories first

Facts only matter

in the setting of the heart.

§

An incendiary March night,

standing in a meadow,

looking up in little girl wonder

In the distance

Tokyo vaporizing

into hot white ash, carried by a vortex

of burning wind, transformed into

a snowfall from Hell

that calmly floated down, and covered the grass

as far as her eyes could see.

§

August, family and neighbors

crowding the barn

surrounding the only radio in the village

a silent circle of heads

weighted with shame and shock

listening to the Great Emperor

surrender their country to strangers

from across the ocean

But she was secretly relieved

Never again would her asthmatic airway

be inflamed by sirens and the musty air

of a stifling underground shelter

her mother pulling her by a stiffened arm,

protesting, in the purple dark of night

as the world exploded around her.

§

Across the Axis, a tiny girl

cried in a Dresden bunker,

unaware that her desperate mother

had raced back

to coax a stubborn father to join them

 

in the safety of the depths

Her family history erased forever

by a carpet of bombs

that rolled down the street

to arrive at the door of her house

precisely as her mother opened it

to plead with him to run for his life.

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Guest Post: What Makes You Who You Are?

By Anne Madeo

Anne Madeo is a genetic counselor who has worked for the National Institutes of Health for the past 11 years.  The views expressed here are her own and do not necessarily represent the views of the National Institutes of Health or the U.S. Department of Health and Human Services.

A few months ago, Bob Resta mused on clients’ responses to queries about ethnicity and what they tell us about the client. A recent conversation on the Nat’l. Society of Genetic Counselors’ listserv about ancestry testing and sex verification got me thinking about a similar issue in a different light.

What defines who we are on a fundamental level? Am I a woman because I wear dresses? Am I a woman because I have two X chromosomes? Am I woman simply because I say I am and that is how I feel on a gut level? Am I a woman if I have two X chromosomes and identify as a female, but I have a point mutation in a gene that increases testosterone production but not so much that in utero or postnatally I have male external genitalia? In the final question we might say that I am clearly female. But in the case of high-level performance athletics, my increased testosterone might provide such an advantage over women with typical human female hormone production that I shouldn’t be allowed to compete as a woman. In a recent decision, the International Amateur Athletic Federation (IAAF) side-stepped the issue of determining somebody’s sex and ruled that if a woman’s androgen levels are within the range of a typical male, she will not be allowed to compete as a woman in IAAF-regulated competitions. Should we should start testing athletes for mutations that predispose them to excel at sprinting and handicap the athletes that have these alleles to make the playing field even?

What about ethnicity or race? Am I Italian-American because I celebrate the Feast of the Seven Fishes on Christmas Eve? Am I Italian American because my paternal great grandparents immigrated here from Italy? Am I Italian-American because I say I am and it is how I’ve been raised and feel? Am I Italian-American because my DNA testing demonstrates that I’m a descendant of both Michelangelo and Leonardo da Vinci? I think most students of genetics would say that no, that last idea doesn’t make me Italian-American. We’re probably all distantly related to some famous individual or the other from the past. I could be Queen Victoria or Genghis Khan’s distant relative. (I doubt many people request testing to see if they’re related to Josef Stalin.)

So, can we use genetics to determine what racial or ethnic group we belong to? Although I usually assume that people with training in molecular or clinical genetics would say no, that’s clearly not always true. The postmodern interpretation of race is that it is a social construct. We determine our race and it is determined for us through family, societal and cultural cues. So, can I identify as Native American if my maternal great great grandmother was Native American and that’s the identity my family has always embraced? It seems that some would say yes, that if your experience is Native American and that is how you identify then you are Native American. But the extreme of the post-modern argument is that I, an individual with no known to me African heritage could claim that I am African-American simply because like most Americans I likely have some African ancestry. What say those who decry postmodernism? The extreme of the position that race and ethnicity are not culturally determined but the result of ancestry is the one-drop rule and the perception that light-skinned multi-racial individuals who identify as “white” are passing.

The obvious answer to all this is that who we are is determined by a complex mix of genetics, family, cultural and individual influences. Which still leaves us with the question—how do we decide ‘who’ or ‘what’ somebody is? Or, is that the right question to ask?

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Guest Post: The Feminine Tightrope Walk

By Myra I. Roche, M.S., C.G.C.

Myra I. Roche, M.S., C.G.C. is an Associate Professor in Pediatrics, Director of Pediatric Genetic Counseling Services, and an investigator in the Center for Genomics and Society at UNC, Chapel Hill.  Her research interests include parents’ understandings of genetic information and their genetic counseling experiences following acceptance of newborn screening for fragile X syndrome.  She co-edited An Ethics Casebook for Genetic Counselors: Ethical Discourse for the Practice of Genetic Counseling, serves on the JGC editorial board, and was chair of the ABGC Certification Exam Committee.  She has worked at UNC for the past 25 years, living in the same house for the last 24.  Her favorite past-time is walking.

“Women are notoriously bad at asking for raises, and as 95% of our field is women, we have suffered the consequences.”

This statement recently appeared on the NSGC listserv with a plea for participation in a salary survey, an extremely important task for a young, thinly-populated profession like genetic counseling. What struck me hard, though, was the echo of a well-worn misconception promising a simple explanation for the pay discrepancy between the genders. The answer: women just aren’t good enough- at being men. This evaluation of women’s negotiating skills is not new and is best summed up by Professor Henry Higgins’ exasperated rhetorical question, “Why can’t a woman be more like a man?” But shouldn’t we be suspicious when righting an inequality requires the “have nots” get better at imitating the “haves”? The fault lines here are clearly drawn.

Yes, the playing (and paying) field between the genders remains uneven. Sorry to be the one to bring this up for the 15 billionth time. Currently women make, on average, 77 cents for every dollar a man makes. Analyzing salaries across genders is full of pitfalls but even after several corrections, the disparity remains (pdf). If you don’t know the facts, see this National Committee on Pay Equity Quiz.

Admonitions that women have only themselves to blame are old but the twist, “thanks for dragging me down with you”, strikes a new, blatant tone that is shocking. If women would just stiffen up their collective lips, stride into their bosses’ offices carrying their weight in unequivocal salary data to prove they are underpaid, well, what’s been stopping them? But if poor negotiating is the culprit, how can it be that women, long stereotyped as being superior wheedlers (particularly of men) to get their way, would inexplicably fail to wield these same skills when more money is the goal. Is this simply a lack of gumption?

As every good negotiator knows you have to be ready and able to walk when the answer is no. To walk, you need options. And good shoes. Women have had fewer options than men because they can become pregnant- something that was, until only an evolutionary blink ago, uncontrollable. This monthly roulette, combined with fewer educational and financial resources, left them less able to walk away because they were barefoot, pregnant, or both.

Looking up from our respective grindstones, we see that women, ages 23- 30, have, apparently, arrived. In those who are college-educated and, not accidentally, without children, we find our proof of principle. Their salaries are comparable, or even exceed, their male counterparts.

Have they figured out how to act like men? Do they have more gumption? Or, do they just have better walking shoes?

Some have argued that women are very savvy negotiators because they understand how risky it is to ignore the social costs implicit in these transactions. When shown a video of a man or a woman asking for a raise, judges of both genders agreed that, yes, certainly, the man should get a raise. But the woman, speaking from the identical script? Nope, and furthermore, we don’t like her either because she is way too pushy. For a woman. Same script, opposite decisions.

For a women wanting a raise, Henry Higgins’ advice was dead wrong. Don’t act more like a man. Act more like a (stereotypical) woman. Be warm and friendly, show more concern for others than yourself, and figure out how to make the raise your team leader’s idea, not yours. Tellingly, women’s reluctance to negotiate for higher pay occurred only when the judge was a man.

Is more money always, unequivocally, without a doubt, better? For many women the answer is clearly no. Certainly not always better than being socially ostracized otherwise what else could be stopping them? As women walk toward more money, they are, at the same time, often walking away. Away from their safety net of people who individually and collectively support them. Add in children, elderly parents, and lots of other factors and the tightrope beings to sway even more, making walking a very precarious choice.

Yes, definitely, arm yourself with all the salary data you can, stride briskly into that office, and try to convince your boss that it was her idea. I applaud your efforts even as I keep my fingers crossed. I hope you get the raise you believe will make you happier. But sometime soon, put yourself in someone else’s shoes. Maybe more money will make you happier. But for women in other shoes, the figures may add up differently. No need to shame others who have done their own math and calculated that the timing is wrong, they can’t afford to waste precious social capital or, frankly, their feet hurt. To imply that colleagues who are not actively negotiating their salary are somehow responsible for anyone’s inadequate income smacks of nothing more than just shoddy reasoning.

Acknowledgment: Thanks to Elana Jones for her insightful editorial comments.

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