Kellogg’s Complaint

Improper kinds of food in the stomach and intestines, will, in this excessively irritable state of the system, cause nocturnal emissions……Farinaecous foods, properly prepared, is incomparably the best aliment for such a sufferer.….

– from A Lecture to Young Men (1838) by Sylvester Graham, Inventor of Graham Crackers

I study the history of genetics because it provides insight into the practice and ethos of genetic counseling. The historical perspective helps me understand why I do what I do. But I also love studying history because of its quirky recesses and unsuspected intersections of historical trajectories. Like  the common thread of eugenics that runs through the histories of masturbation, breakfast cereal, and vasectomy.

Most scholars point to the early 18th century as the beginning of the Western World’s repulsion/fascination with masturbation. In about 1712, an anonymous author published a pamphlet titled Onania; or The Heinous Sin of Self Pollution and all its Frightful Consequences, in both SEXES Considered …. (the title goes on for another 30 words or so) that describes the physical and psychological toll taken on those who engaged in what was politely called “the solitary vice,” as well as advice on how to treat the newly-minted medical condition.  Onania appeared in multiple editions throughout Europe and the United States. Over the next two centuries numerous similar publications followed , all  variations on the same theme, i.e. men and women needed to be saved from the debilitating effects of this evil practice (WARNING: This video link is somewhat risqué).

Some of the great minds of Western history weighed in on self-stimulation, such as Immanuel Kant (he is the father of autonomy, after all), Jean-Jacques Rousseau, and of course Sigmund Freud. Richard Wagner, the great German composer and anti-Semite, foreshadowed future connections between eugenics and masturbation when he blamed the degeneracy of Jews on their supposed frequent practice of “self-pollution.” Some authors recommended extreme physical measures to prevent masturbation (WARNING: this link is not for the weak of heart or those who might be offended by unusual paraphernalia). Christine O’Donnell is just one of the lesser lights in a long and eclectic line of anti-masturbationists.

In America, one of the most committed anti-masturbationists was John Harvey Kellogg, a respected surgeon who believed that a vegetarian diet and vigorous exercise promoted physical and emotional health. Kellogg was particularly concerned that sex, including sexual relations between husband and wife , was detrimental to health and well-being (all of his 42 children were adopted or foster. He and his wife slept in separate bedrooms and proudly spoke of their lack of a sexual relationship). The most debilitating sexual behavior was masturbation, which, according to Kellogg,  could be identified by any of 39 signs such as general debility, early signs of consumption, premature and defective development, failure of mental capacity, love of solitude, unnatural boldness, mock piety, paralysis, and eating clay, slate pencils, plaster, and chalk.

For Kellogg, the solution to the masturbation problem was simple – a healthy diet and active lifestyle.  Kellogg concocted various foods with the aim of promoting health and preventing masturbation. Granola was one of his earlier attempts. Eventually, Kellogg, along with his brother Will, developed what they felt was the perfect health food – flaked dry cereal, what we know today as Kellogg’s Cornflakes. The Kellogg brothers served cornflakes at their exclusive Sanitarium in Battle Creek to well-heeled clients  – along with a daily serving of yogurt administered to both ends of their clients’ digestive tracts. One bowl of cornflakes in the morning and Voila!  not only will you be healthy, you will become master of your own domain.

Concerned as he was with individual purity, it is not surprising that Kellogg was interested in racial purity. In 1906 (the same year his brother Will founded what would eventually become the Kellogg Cereal company), he established the Race Betterment Foundation in Battle Creek. The Foundation, one of the key eugenic centers in the United States, sponsored 3 conferences on race betterment, collected eugenic family histories, and worked with other eugenics organizations around the country.

From here the story heads south to the state reformatory for youthful offenders in Jeffersonville, Indiana where Dr. Harry Sharp presided as the institution’s medical superintendent. The aptly named Dr. Sharp is generally regarded as the father of vasectomy. Sharp honed his surgical skills on the reformatory’s young men among whom masturbation was presumably a common occurrence, a behavior that did not sit well with the medical superintendent. As Sharp tells it “…the story of my first operation in October, 1899. A boy 19 years old came to me and asked he be castrated, as he could not resist the desire to masturbate….I did the operation [vasectomy, not castration]…..In two month’s time he came to me and told me he had ceased to masturbate and that he was all right… Three months after that operation he made satisfactory advances in the school. This was true practically of every man operated on; every man who has ceased to masturbate has assigned the same reason: practically every man sleeps better, feels better and has a better appetite.” Sharp went on to perform another 175 vasectomies between 1899 and 1907 “solely for the purpose of relief from the habit of masturbation.”

Sharp, like many of his contemporaries, became interested in eugenics.  From his viewpoint in a penal institution, he saw a world overcrowded with indiscriminately breeding mental and physical defectives: “The class of individuals is very prolific, from the fact that in the matter of sexuality, as in everything else, they know of no self-restraint. They indulge their selfish lust, ab libitum, with no thought whatsoever  as to what the result may be…..They simply know that they want gratification, and gratification they are going to have.” Sharp wanted to curtail reproduction among those with defective germ plasm.  After dismissing alternative approaches like marriage restriction laws, castration, and segregation, he championed vasectomy  as the cure for eugenic degradation because, in his view, the procedure was quick and easy to perform, had no serious side effects, did not hamper a man’s pursuit of life, liberty or happiness, and “it is endorsed by the persons subjected to it.” Sharp performed 456 eugenic vasectomies between 1899 and 1908. Note that Indiana did not enact a mandatory sterilization law until 1907; in 1909, Indiana governor Thomas Marhsall ordered a moratorium on sterilizations (In an odd historical connection to another well-known consumer products company, the reformatory eventually became a factory for Colgate-Palmolive).

It is easy to dismiss Kellogg as a, well, flake, and Sharp as a narrow-minded crank. Yet in many ways society has benefited from both men (though not in the ways they intended). Neither man fits neatly into labels like eugenicist or eccentric. They were complex men who were  products of their complicated times. Eugenics, anti-masturbation preaching, health foods, and vasectomy were all “in the air” in the late 19th century, and it is not surprising that their paths should criss-cross.

There is an ironic modern twist to the end of this tale. The state of Washington recently enacted legislation granting licensure to genetic counselors. In completing my license application, I was required to affirm that I have never been convicted of “frotteurism.”  I have never been accused or convicted of any crime but I could not honestly answer the question because I didn’t know the meaning of frotteurism, so I looked it up: the practice of touching or rubbing against the clothed body of another person in a crowd as a means of obtaining sexual gratification. All those bowls of cornflakes and graham crackers from my childhood finally paid off.

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Guest Post: Using your Skills Outside the GC Session

By Leslie Ordal

Leslie Ordal writes and works in continuing medical education in Ottawa. A graduate of Wellesley College, she is in the process of making a career change to genetic counselling. She maintains the Twitter account GenCounsNews, devoted exclusively to the topic of genetic counselling, and is also active in community health education activities.

Having spent the last year and a half preparing to apply to a graduate program for genetic counseling, I’ve read with interest the entries on this blog about “non-traditional” roles for genetic counselors. My own aspirations in the field fall more on the traditional side, but coming from a varied academic and professional background it’s interesting to see how genetic counselors are applying their skills outside of the textbook definition.

I work in health care and have observed a growing movement to improve communication between providers and patients. I’ve been to a few informational sessions about the need to communicate in plain language, or take into account an individual’s background and beliefs when advising them about their health. It occurred to me that the ideal person to coordinate this kind of education would be a genetic counselor. GCs are able to tailor their information to a patient’s individual level of knowledge, know how to discuss sensitive topics in an unbiased way, and have a keen understanding of the impact of even seemingly minor health care decisions on people’s lives. These skills are useful beyond the field of genetics: nurses giving discharge orders to patients need to be able to simplify their instructions appropriately, for example, while physicians may benefit from understanding the cultural reasons behind a patient’s refusal to answer particular questions or undergo a certain procedure. All health care providers can improve their care by understanding how a poorly phrased diagnosis or comment about a patient’s condition may have a major effect on that patient’s life and well-being.

A genetic counselor would be well-equipped to share this kind of knowledge and insight with other health care professionals. This kind of work, while not a career in and of itself, seems like an interesting “side project” for the genetic counselor who wants to expand the field they work in and at the same time raise awareness of their own profession.

Have you had any experiences where you used your genetic counseling skills outside your field? If so, please comment–I’d be interested to hear about them.

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Happy New Year from The DNA Exchange!

Here’s a fun visual representation of the most commonly used words on our blog in 2010. Looking forward to seeing what 2011 holds…

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Questioning Mandatory Newborn Screening Programs

Mandatory newborn screening has made the news several times this month.   News articles have touched on the following themes:  concerns about privacy and discrimination, unnecessary uncertainty and anxiety, and the constitutional of newborn screening programs.

MN Supreme Court to hear newborn screening case

The Citizen’s Council of Health Care (CCHC) filed a suit against the State of Minnesota and the Minnesota Department of Health on behalf of nine families.  Even though lower courts found that newborn screening program does not violate the 2006 state genetic privacy act (Minn. Stat.  § 13.386, subds. 1-3) Minnesota’s Supreme Court has agreed to review the case.

Class action filed over newborns’ blood

Parents whose infants bloods were possibly stored and used in research without consent has filed a class action lawsuit against the Texas Department of State Health Services.

New UCLA study raises questions about genetic testing of newborns

Mandatory newborn screening tests can save lives and improve quality of life for children but can also lead to uncertainty for families who receive unclear screening results.  A UCLA study refers to this as “the collateral damage of newborn screening.”

**click on each underlined title to read the original news article**

This is a critical period for mandatory newborn screening programs.  What are our responsibilities as genetic counselors?  How can we improve mandatory newborn screening programs?  Should information about newborn screening programs be more readily available?  Should there be more support provided during the follow-up period?

 

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Considering The Future of Genetic Counseling, Act II

When it comes to the future, there are three kinds of people: those who let it happen, those who make it happen, and those who wonder what happened.
John M. Richardson, Jr.

Those who predict the future are doomed to be wrong; just ask anyone at the race track or on Wall Street. But fear of failure should not hold us back; we have much to learn from error. So, to continue with the theme of the future of genetic counseling (see my previous posting), I will venture a few more guesses about the issues we should be considering when planning for tomorrow.

1. ) Safe and Legal Abortion Is Not Guaranteed For The Future : Abortion and abortion providers are under legal, social, and physical attack. It is not out of the question that Roe v. Wade may one day be overturned. Although it makes us uncomfortable to hear it, prenatal diagnosis is largely predicated on the availability of abortion.  It does not make economic sense to offer aneuploidy screening primarily to prepare parents for the birth of a

child with disabilities. If abortion becomes unavailable, insurers may be less likely to cover prenatal diagnosis, which could result in a dramatic drop in prenatal diagnosis job opportunities. And economic issues aside, is it morally justifiable to undertake the small risk of losing the pregnancy from amniocentesis or CVS simply because of parental anxiety or the desire for emotional preparation? You say that prenatal diagnosis can be important to long term developmental/medical outcome and familial adaptation. I say, aside from rare exceptions, the data is just not there to support your contention (and remember that the plural of “anecdote” is not “data”). So go out and do the studies and prove me wrong.

2) We Can’t Afford to Ignore Cost Effectiveness: Genetic counseling will likely come under increasing economic scrutiny. While I want to believe that our value to health care goes beyond dollar-savings, we nonetheless have to fiscally justify our employment and work loads. And, at times, we may be facing contradictory economic pressures. We will want to show that we lower healthcare costs by reducing the number of unnecessary genetic tests, ensuring appropriate medical screening based on genetic assessment, or whatever other means to demonstrate that we help produce a healthier population in a cost-effective manner.

On the other hand, we will be receiving subtle and not so subtle pressures from our employers to increase the number of revenue-raising activities. Back in the early 2000s, many centers, including my own, experienced a sharp drop in the number of patients who underwent amniocentesis, I suspect the result of  a social trend in changes in attitudes toward abortion and disability. At one point, my boss said only half-kiddingly “Bob, you are counseling yourself right out of a job.” Genetic counselors need to take the lead in conducting studies that show our cost-effectiveness while simultaneously demonstrating that we do not hurt our institutions’ bottom lines.

3) The Human Genome Project May Not Deliver On Its Promises: Genomic medicine is the medical technology du jour. All sorts of claims have been made about how genetics will revolutionize health care and cure everything from diabetes to the heartbreak of psoriasis. We have promised the moon. But what if the “genetic revolution” never comes? Or what if genomic medicine simply falls by the wayside as some new medical technology becomes sexier and more promising than genetics? Will funding for genetic research and clinical positions dry up? We need to stay alert to changes in other areas of medical care and adapt genetics to the changing practice of medicine.

4) The United States Will Not Be The Center Of The Genetics Universe: Until relatively recently, genetic counseling and genetic counselors have been concentrated in the US.  Although I haven’t tabulated the numbers, I am pretty sure there are more genetic counselors in the US than in the rest of the world combined. While many valuable contributions have come from Canada, the UK, both sides of the Tasman Sea, the Netherlands and other countries, the US has been the leader in the field (I will accept any criticisms of national chauvinism leveled by my international colleagues). But over the last 10-15 years, genetic counseling has spread to many other countries. New genetic counseling models will emerge as genetic counselors work in different cultural and geographic settings, especially  in non-English speaking countries. More international meetings, communication, and cooperative transnational research will be critical to the future of genetic counseling. The US model is one way of providing genetic counseling; it is not THE way, or necessarily the best way.

5) Office Visits and Flipbooks Are Soooo 20th Century: As Allie Janson Hazell and others keep reminding me, the Internet and e-technologies offer opportunities to reach more patients in a variety of ways. And as Vicki Venne recently pointed out, Millenial Generation students and patients are not going to stand for old fogey communication and teaching techniques. Some of us are just beginning to utilize the telephone to communicate test results.

I mean, come on, Sugar, it’s time to take a walk on the Wild Side.

We must open our minds and embrace, adapt to, and integrate new communication technologies to better serve our patients. Brick-and-mortar counseling has a critical place, but it may not always be the best way to ply our trade. And on-line genetic testing is not necessarily the spawn of Satan. We can’t – and maybe shouldn’t – control access to all genetic testing, but we can work to make sure genetic testing is used effectively and appropriately by patients and health care providers.

I hope I have provoked some of you into disagreement, thought, and action. Where am I off the mark? Which of my predictions are bound to be wrong? What are your predictions? How can we best prepare ourselves for the future?

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Genetic Counselling Awareness Week hits Canada!

Although I know much of our readership is US-based, I thought you would all be interested in an initiative of the Canadian Association of Genetic Counsellors (CAGC) that is taking place this week.

To commemorate the 20th Anniversary of the CAGC, we’ve designated November 21-27 Genetic Counselling Awareness Week in Canada. As a Co-chair of this committee, it has been interesting and inspiring to see how this has developed into over the course of this year.

Rather than creating a structured event for GCs to carry out across the country, we put the control in GCs hands and challenged genetic counsellors nationwide to plan an initiative or event that would help to increase professional awareness in their own institution or community. The thinking behind this approach is that each region has it’s own unique strengths and challenges, and by allowing GCs to customize their message to their audience, we hope that we will have the most success in getting the word out.

We’ve created a website where we listed the events that will take place across the country this week. As I have been collecting this info from the various sites, it has been really fun to see what GCs have decided to do. Interestingly, several centres will be hosting film screenings, either in their own institution or at a community cinema. For example:

  • In Edmonton, Alberta there will be a screening of the documentary, In the Family, at a local theatre. This documentary follows a woman through her decision-making process regarding prophylactic surgery, after learning that she is a BRCA mutation carrier. Following the film, a genetic counsellor will lead a discussion regarding current practices in genetic counselling and genetic testing.
  • Genetic counsellors in Winnipeg, Manitoba have organized a screening of the documentary “Twisted” and a panel discussion in collaboration with the Dystonia Medical Research Foundation Canada. The documentary, by Laurel Chiten, weaves the stories of three dystonia sufferers as they seek treatment.
  • In Ottawa, Ontario, genetic counsellors are working in collaboration with local art company DNA11, have organized a screening of GATTACA. This late 90’s film explores the potential ethical issues that arise in a futuristic gene-centric society.

In Toronto we will be hosting a free community event at a local pub, where we will have a panel discussion and Q&A on the impact of genetic testing on individuals, families and society. Several centers plan to set up information booths in their hospital lobby and have arranged information sessions and lunch and learn events for hospital staff.

In it’s inaugural year, we expect to learn a lot and build on the experience for next year. We will collect feedback forms and photos and post them in the weeks to come on http://GeneticCounsellors.ca. Check back often to see how this develops. And who knows? Maybe next year we can collaborate with the NSGC to create a North America wide GC awareness initiative.

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Demographics and The Future of Genetic Counseling

Those who do not study and prepare for the future are doomed to live it rather than to shape it. Keeping an eye on what might be coming down the road in the next 30 years could help genetic counselors play a key role in 21st century medical care. Let’s look at the some of

the demographic factors that got us here and then try to figure out where things might be headed.

Since about 1980, genetic counselors have been surfing a significant and unrelenting demographic wave – delayed childbearing. The AMA rate (the percentage of pregnancies to women 35 and above) increased virtually every year from 5% in 1980 to  nearly 15% in 2008; this pattern is even more pronounced in many Western European nations. We were in the right place at the right time. With apologies to the Beach Boys, we caught a wave and we were sittin’ on top of the world. Incidentally, I have noticed an ever so slight flattening of the AMA rate in the US over the last few years; I am not saying that it’s a close out yet or that we should grab the next ankle buster that rolls in, but we should be keeping our eyes open for a different demographic heavy.

The growing AMA rate profoundly influenced the genetic counseling job market and the very practice of genetic counseling. For example, the number of genetic counseling jobs increased with:

  • The number of women seeking prenatal diagnosis due primarily to their age.
  • The false positive rate of serum and ultrasound screening for fetal aneuploidy, with much higher false positive rates for women over 35, resulting in more referrals for genetic counseling.
  • The number of referrals for infertility, which increases with the age of the parents.
  • More referrals for genetic counseling for breast cancer. Although delayed child-bearing itself is not a hallmark of hereditary breast cancer, it can result in younger age at diagnosis and hence more likely to lead to genetic counseling.

The AMA rate also helped to shape the ethos and face of genetic counseling. The Holy Ethical Trinity of genetic counseling – autonomy, informed consent, and reproductive freedom – is worshiped by the largely liberal and progressive AMA population. Not surprisingly, the demographic profile of genetic counselors broadly reflects the patient population they serve, i.e., middle to upper middle class well-educated white women. We have more or less been the socioeconomic, physical, and ethical mirror images of our patients.

Trends, of course, have a habit of being temporary. The AMA rate will likely eventually decline as socio-economic factors change, reproductive preferences fluctuate , and political  moods swing. So what other demographic trends might influence the future of genetic counseling? Here are some population projections for the year 2050, based on a report from the Pew Research Center:

  • About 20% of Americans will be foreign-born, which will be greater than the percentage of foreign-born Americans during the great migrations from Europe a century ago. Currently, about 12% of the US population is foreign-born.
  • Non-Hispanic whites will make up less than 50% of the US population
  • The  percentage of the US population who are Latino or Asian will  increase to 29% and 13%, up from 14% and 5%, respectively (to say nothing of the increase in people of mixed ethnicity).
  • The percentage of the US population 65 and older will increase from 12% to 19%

What might this mean for the practice and profession of genetic counseling profession? For simplicity’s sake, I am ignoring other factors that can influence the future of the profession, such as advances in medical technology, new health care delivery models, and changes in the economics of medical services.

First off, we must increase the ethnic diversity of the genetic counseling profession so that we – and our support staff – reflect the demographic make-up of our patients. This can  help overcome significant social and psychological barriers to medical services and improve the cultural awareness and sensitivity of the profession. Perhaps we can take a lesson from Canada, where immigrants already comprise 20% of the population. Secondly, the guiding ethical and counseling principles of the profession must evolve to be in tune with the many and varied beliefs of an ethically and ethnically diverse population.  Not every culture buys into the supremacy of individual autonomy, nondirectiveness, or other lofty ethical principles of Western medicine.

An aging population means that we will be seeing more patients who are physically and cognitively impaired. The traditional educational and counseling models utilized by genetic counselors may not be particularly effective for this segment of the population. Because it may not be so easy for older individuals to navigate to and around large urban medical centers we may need to increase our presence in alternative medical care settings. From a clinical standpoint, we will also need to be sensitive to new or unanticipated manifestations of genetic diseases.

Where do you see the genetic counseling profession in the next 10, 20, or 30 years? What demographic trends do you think are important? How can we best prepare ourselves? What did I miss? Where do you disagree with me?

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