Tag Archives: Genetic counseling

Is Down Syndrome Disappearing? Well, Not Exactly But….

Iceland has given the world the Eddas, Sigur Rós, Björk, and some magnificent geology.  A more ambiguous achievement, though, is suggested by a recent CBS News story that claimed that Down syndrome is disappearing from Iceland as a result of prenatal testing. The claim has been bouncing around the Internet for a few years. The earliest reference I could find was a November, 2015 letter sent to the Office of The United Nations High Commissioner for Human Rights authored by Downpride, an international advocacy group for people with Down syndrome. The letter is an “[a]ppeal to the United Nations to stop discriminatory use of prenatal genetic screening aimed at eradication of people with Down syndrome and other groups.” It was, in my view, an understandable and justifiable reaction to largely non-critical widespread adoption of Noninvasive Prenatal Testing (NIPT) from a community that has good reason to be concerned. Needless to say, it generated a lot of heated reaction. Just Google “Iceland Down syndrome” and you will see what I mean.

Delving into the story was like getting lost in a hall of mirrors; many sites simply referenced each other. But the claim that Down syndrome is disappearing from Iceland and that 100% of pregnancies with Down syndrome in Iceland are terminated turns out to be not quite so straight-forward. While Iceland represents a microcosm of the larger concerns of people with disabilities, their families, and their supporters, it is not necessarily an accurate reflection of the macrocosm of the larger population dynamics of Down syndrome in other countries, particularly the United States.

The ultimate source of the data, according to the Downpride letter, was testimony presented to The Althing, the Icelandic parliament that is the world’s longest existing legislative body. I tried unsuccessfully to find that testimony. I then searched PubMed but found only limited help. So I decided to do my own back-of-the-napkin calculations. I obtained the birth distribution by maternal age in Iceland for 2016, and grouped the ages by quinquennia. The expected frequency of Down syndrome was based on data from 1976, prior to the advent of widespread prenatal diagnosis.

Age Group # of Births Exp. Frequency of Down S. Exp. # of births with Down S.
15-19 72 1/1667 0
20-24 592 1/1587 0.37
25-29 1305 1/1087 1.2
30-34 1218 1/763 1.6
35-39 672 1/248 2.7
40-44 165 1/79 2
45+ 10 1/24 0.4
Total 4034  1/488 8.27

 

Thus, in Iceland in 2016, there were 4034 births. In the absence of prenatal diagnosis and selective termination, 8 or 9 babies with Down syndrome would be born, for a frequency of ~1/450-500 births. I then made the following assumptions, acknowledging that each has some potential error:

  • Based on a 2016 publication, about 80% of pregnant Icelandic women will choose to undergo prenatal screening
  • According to Dr. Hulda Hjartardóttir, chief of obstetrics at Iceland’s National University Hospital, among Icelandic woman who have a positive screen, about 25% decline diagnostic testing and continue the pregnancy. Thus, roughly 1/3 of Icelandic pregnant women either do not undergo screening to begin with or decide to continue the pregnancy and not proceed to diagnostic testing if a screening test is positive. The impact of these percentages on Down syndrome frequency depends on the age distribution of those who declined screening or diagnostic testing, but for argument’s sake, I assumed an equal distribution across maternal ages.
  • 100% of women whose pregnancies are diagnosed with Down syndrome will choose to terminate. I could not verify this claim, but I decided to go with the most extreme scenario. This has not been the experience in many countries, where termination rates have been high but not typically 100%.
  • The CBS News story mentions the Combined Screen, so I assumed this was the standard screening test in Iceland when the claims were made in The Althing. I therefore set the detection rate for Down syndrome to 90%, that is, of all women undergoing screening, about 10% of pregnancies with Down syndrome will be screen normal and would not proceed to termination (some studies suggest that the Combined Screen may have a sensitivity somewhat less than 90% but because about 21% of pregnancies in Iceland occur in women 35 and older, a higher sensitivity – and false positive – rate is expected).

Based on these assumptions and the above table, of the potential 8-9 babies born with Down syndrome, about 2-3 would actually be born because their mothers did not undergo either prenatal screening or diagnostic testing, and another baby with Down syndrome would be born because the Combined Screen would be expected to miss about one case. In other words, the total number of newborns with Down syndrome in Iceland would be expected to drop from 8-9 every year to about 3, maybe 4, per year. These numbers could increase or decrease with many factors, such as changes in fertility rates, maternal age distribution, the sensitivity of screening tests, social trends that influence the choice of abortion, and random fluctuations that occur with any demographic trend especially with the small number of births in Iceland (about that many babies were born last year in the hospital where I work in Seattle). If readers know of empirical data from Iceland to support or refute my estimates, please share it.

Of course, for advocates, every loss of a pregnancy with Down syndrome is serious, no matter how small the number. But these estimates put the concerns in some perspective. Among other things, it is fair to say that most, but not 100%, of pregnancies with Down syndrome are terminated in Iceland, and the birth prevalence of Down syndrome in Iceland is falling considerably but not likely, in my view, to disappear entirely.

I think a more realistic picture of the impact of prenatal screening on Down syndrome, in the US at least, is provided by Brian Skotko and his colleagues Frank Buckley, Jennifer Dever, and Gert de Graaf in a recent publication in the American Journal of Medical Genetics. Over the last few years, they have consistently provided some of the most reliable estimates of the demographics of Down syndrome and the effects of prenatal screening.

According to the de Graaf et al. paper, a detailed look at changes over time in the demographics of Down syndrome in 9 states, the number of people living with Down syndrome has steadily increased since 1950. The two major factors driving that growth have been longer survival due to better medical care along with the unrelenting trend of the last 35-40 years of delayed childbearing. This growth, however, has been partially offset by a loss of births with Down syndrome due to prenatal screening. The loss varies with geographic region, but overall, the prevalence of Down syndrome is roughly 70% of what it would be if prenatal screening were not available. Interestingly, the most growth in the Down syndrome population occurred among Hispanics and Native Americans. So, unlike the near elimination of Tay-Sachs disease in many Ashkenazi Jewish communities, the prevalence of Down syndrome is dropping, but not close to disappearing, at least in the US.

Other factors may affect the Down syndrome birth frequency, such as changes in maternal age distribution, availability of abortion, and access to health insurance. For example, in the highly unlikely event that every woman 35 and older refrained from pregnancy, the birth frequency of Down syndrome in the US and many Western European countries would be reduced by more than 50%. On the other hand, if abortion were to become illegal (not highly unlikely), then presumably the birth frequency of Down syndrome would increase. Limiting access to good medical care (unfortunately also not highly unlikely in the US) could lower the overall prevalence of Down syndrome because of reduced survival.

Current trends suggest that, for the immediate future, prenatal screening will continue to reduce the birth prevalence of Down syndrome. It is becoming increasingly easier for women to undergo prenatal screening and more difficult to just say no. This is due to aggressive marketing by commercial labs of “newer, better, bigger, cheaper” screening tests like NIPT; the dearth of time and resources devoted to unbiased education about Down syndrome and the pros and cons of screening tests; inequitable social distribution of medical resources and social support; and the rarity of long, difficult discussions between pregnant women/couples and their providers about whether they should even enter the prenatal screening cascade to begin with. It also does not help matters that the current US President lacks any moral decency and takes pleasure in mocking people with disabilities.

Although I am a strong supporter of women’s reproductive rights and well-informed, gut-wrenching decisions to terminate a pregnancy, it is becoming increasingly difficult to provide ethical justification for further expansion of prenatal screening, or expanded carrier screening for that matter. This is something that society needs to address but particularly genetic counselors because we are in the thick of it.

As I have previously argued, almost no research has been conducted that has tried to demonstrate whether prenatal screening can improve the medical, social, and emotional lives of people with disabilities and their families. Some women undergo prenatal screening because they think it will prepare them for raising a child with Down syndrome, but we really can’t tell them if screening does help or if it is worth their emotional and psychological investment. Carrying out such research is critical. If we can demonstrate broader benefit of prenatal screening, then we can open up a dialogue with the disability community rather than continue the shouting matches, and offer greater and more equitable justification for NIPT and other screening technologies.

Or we can continue shouting at or dismissing one another.

 

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Euphemisms, Chucklers, Pet Peeves, And Wincers: Thoughts On Our Professional Vocabulary

Words are the clothes thoughts wear.

– Samuel Beckett

I struggle with words. I struggle when I counsel patients to find just the right words to explain genetic complexity while also trying to engage them in a counseling relationship. I sometimes catch myself silently groaning at the stream of what sounds like the absolutely wrong choice of words pouring out of my mouth. I wind up feeling like the voice of the parents in those Charlie Brown cartoon specials; just Wah-Wah-Wah, nonsense utterances that have no meaning or relevance to the central characters. I struggle to understand the psychological meaning of the words patients use to express their thoughts, fears, anxieties, understandings, and misunderstandings. I agonize over these blog postings, repeatedly re-working them until they have the right tone and tenor but still I always feel slightly dissatisfied with some detail of the never-quite-finished product. A close friend says that for him the wrong word is like a flat note in a musical composition. One jarring note and it takes a while for your ear to re-adjust.

So yes, I confess that I am overly obsessed with words. It is yet one more of those Devil-and-Angel aspects of my personality. Good and bad must co-exist else neither exists at all. That obsession is the impetus for this blog posting – exploring the deeper meanings, ramifications, and implications of the vocabulary of genetics, medicine, and reproduction.

I start with words that make me wince. I have previously written about products of conception, habitual aborter, and mutant. Let me add incompetent cervix and birth defect to that list. Even though these words are not used with dark intent, they say a lot about underlying unconscious attitudes and biases. Incompetent cervix is clearly a term created by men for women. Would a man who has difficulty attaining or maintaining an erection ever be said to have an incompetent penis? Birth defect is no better, though in all honesty I catch myself using it from time to time. Just another malfunctioning piece of machinery, a mistake, a reject, an inferior product of conception. And don’t get me started on crack babies. These are all judgmental and harmful words, weaponized to induce blame, shame, and guilt.

In some contexts, benign words can be manipulative, such as high risk. Every patient has a unique and flexible definition of high. But when professionals say high risk it can create a disproportional sense of worry and anxiety. For example, it is often said women 35 and older are at high risk of having a baby with Down syndrome. You can try to soften that by saying higher but the patient mostly hears the high part of that word. In fact, though, the chance that a 38-year-old woman will not have a baby with an aneuploidy is 99%. Those are pretty good odds in my book. But the presumably unconscious and unstated attitude of health care providers is that aneuploidy is an unacceptable outcome – a risk, not a probability – when they show a woman a graph or table displaying age related odds without an objective reference point to put the numbers in context. That is a lot scarier than reframing it as barely 1%, as well as sounding like an unstated scolding – “Well, if you hadn’t waited so long to have a baby, you wouldn’t have this problem.”

Some words are euphemisms. Family balancing – using reproductive technologies to choose the sex of a baby for non-medical reasons – comes to mind. It is fine and normal to want a baby of a particular gender. There are also different cultural imperatives and norms, and complicated psychological reasons why a particular gender is strongly desired.Calling it balancing glosses over the darker implications of reinforcing, and profiting from, sexism. And it implies that a family of all girls, all boys, or varying gender mixes might be out of balance.

Family balancing is a cousin to gender swaying. At first I honestly thought it referred to someone like David Bowie who seemed to fluidly float along the gender spectrum. As I have come to learn, gender swaying describes the practice of trying to increase the odds of having a baby of a particular gender by using folk methods and pseudoscientific techniques, like ovulation timing, cervical PH, and, my personal favorite, positive and negative ions in the air that can be affected by artificial lighting (just why would artificial lighting be found, uh, “down there”?). Somehow it seems more ethically innocuous than family balancing, maybe because the success rate is usually not statistically significantly greater than 50%. But family balancing and gender swaying are on the same moral spectrum. Another euphemistic term is fetal reduction, which neutrally smooths over the rougher ethical edges when a medical procedure transforms a quadruplet pregnancy into a twin pregnancy.

In genetic counseling, we try to reciprocally engage our patients to make the experience more counseling than lecturing. But there is still an underlying power dynamic that can sneak between the cracks and that can remind the patient who is in charge. An example is when we say that we take a family history. Although it is not how we intend to use the word, taking implies that I have the power to assume ownership of story that belongs to the patient, a story that is deeply personal. And by taking it, I now own this intimate knowledge and transform it into something that I reframe into a medical context that gives me power by “interpreting” it for the patient. The message can be “I know what you think about your family history, but let me tell you what it really means.” Perhaps too this power differential  underlies some of the unease many genetic counselors have about Direct To Consumer genetic testing – it diminishes our gatekeeper role of controlling access to genetic testing.

Along those lines, think of the power relationship implied by medical consultation notes that state that the patient denies a family history of genetic disease or drug use or certain symptoms. Denies? Like they are suspected of lying or a criminal activity, and I am the Grand Inquisitor trying to drag the truth out of them? Were these patients ever expecting the Spanish Inquisition?

Not all of my vocabulary pondering is dark. Some reflect my personal pet peeves on usage. I am not a Language Fascist who tries to enforce arbitrary grammatical rules because, dammit, that’s the right way. On the contrary, I love language for its variety, constant evolution, playfulness, and wonderfully creative adaptability. But a few words rub me the wrong way. Pre-existing condition is an ear-sore for me. How can something be pre- to existing? Either something exists or it doesn’t. They are existing conditions. Of course, this mild upset is nothing compared to the outrage I feel at the pig-headed, uninformed, downright nasty views about pre-existing conditions expressed by the President of the United States and his lackey Director of the Office of Management and Budget, they who are too shameful to be named. Now there’s a pair of bad hombres you’d love to rope with Wonder Woman’s Lasso of Truth. Another “earitation” is when someone writes “The patient was told to return in 3 weeks time.” In that sentence, the word time belongs in the Department of Redundancy Department; the same information is communicated if the word is omitted. For my internal ear, it is a jarring note.

Another, perhaps more justifiable, pet peeve is when an author or speaker says something along the lines of “there was a 500% reduction in disease occurrence following this intervention” or “a five fold reduction in occurrence.” Sorry, just flat out impossible. Nothing can be reduced by more than 100% or 1 fold. After that, it ceases to exist (unless of course it were pre-existing) or it becomes an imaginary number*. If the number of cases of a disease decreases from 500 patients to 100 patients, that is an 80% reduction. Or there are one fifth of the number of cases that occurred prior to the intervention. And I don’t believe I am being a kvetcher here. Accuracy in statistical analysis and interpretation is at the very core of the scientific process and discourse, so it is critical to use the right words to describe research results.

There are some words that make me smile when I hear them, such as Captain Underpants’ arch-nemesis Professor Pippy Pee-Pee Poopypants or HMS Boaty McBoatface (okay, they have nothing to do with genetic counseling but even if your inner mind is not permanently mired like mine in the 8 year old boy phase, these names make you chuckle). Similarly, I smile when I hear surgeons describe large breasts as generous. How nice that someone has generous breasts! It almost sounds like a description of a wet nurse. A long time favorite is Instant Baby Formula, which I first encountered 45 years ago when I was a stock clerk at a Brooklyn grocery store. Just add water, and Voila! You have a baby. What could be simpler? None of the icky bother of 9 months of pregnancy or the agonies of labor.

I would love to hear from the Good Readers of The DNA Exchange about their thoughts on the vocabulary of genetics and medicine. What in our professional lexicon makes you irritated, raises your moral hackles, induces euphemistic groans, or you just enjoy? Given the widespread employment of genetic  counselors in laboratories, is there some new Lab Vocab starting to emerge?

As Raymond Carver once wrote in a NY Times piece, “That’s all we have, finally, the words, and they better be the right ones.” So let us make sure we think carefully about them, choose and use them wisely, never weaponize them, and remember to enjoy them.


  • – Yes, I know that this is not technically an imaginary number. I am just employing poetic license.

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Why Me?

“We tell ourselves stories in order to live.” – Joan Didion

Even after decades of clinical experience I am still struck by the sometimes random and sometimes cruel nature of the occurrence of genetic and congenital conditions. You meet a family with 3 successive children with a profoundly serious recessive condition and the next carrier couple that you see have 6 unaffected children. A grandmother watches her husband, son, and grandchildren die from Li-Fraumeni cancers, and then you encounter a TP53 mutation in a young woman with breast cancer and a family history devoid of other cancers. A gene panel reveals that a woman has dodged a BRCA1 mutation in a pedigree overflowing with breast cancer – but she has a pathogenic APC mutation and not a single relative with colon cancer or polyposis. An adopted woman learns she is pregnant the same day she is contacted for the first time by her biological family and told that her biological father just died of Huntington disease.

We consult the Codex of OMIM or the Oracle of Bayes, and then tell scientific stories of skewed mendelian ratios or stochastic processes (Literal translation: Shit happens), stories as much for ourselves as for our patients. My favorite (non)explanatory story is “a multifactorial combination of genetic and environmental factors.” Come on, please. What human trait is not the result of a combination of genetic and environmental factors? We can wind up committing the original sin of genetic counseling – responding only with cold, meaningless facts to patients’ cris de coeur for comfort, validation and acknowledgment of their emotional states, their quest for a psychologically meaningful understanding and acceptance of their situation, and the need to make sense of their suddenly upturned lives. We should be forgiven though. Genetic counselors are only human and who among us is without sin? None of us were immaculately conceived.**

Patients will fill this void with their own stories. It was that stress in my life. They used to spray insecticide all the time in my neighborhood and now every house on my block has someone with cancer. Then there are the somewhat morally judgmental plaints – I am a vegan, I exercise daily, and put no poisons in my body; my sister eats only fast food, smokes, drinks, and has a new boyfriend every weekend, but I am the one who gets cancer and it’s just not fair. Or it must have been the manufacturing plant down the road with that awful chemical smell (How come no one ever lays the blame on pleasing aromas like cinnamon buns in the oven, freshly roasted coffee, or the sensual curry infused scent of an Indian kitchen?).

If Joseph Campbell was right, mythopoesis is as innate as erythropoiesis. Our minds can’t help but tell stories like our marrow can’t help but make blood. So let me offer my own mythological explanation of the epidemiology and distribution of genetic and congenital disorders – Pedigrus Rex, the god and ruler of pedigrees. Pedigrus is definitely  in the classic Greco-Roman tradition of a powerful god ready to unleash his power at a mere whim or perception of insult, without the slightest thought to consequences. As much Zeus as Trickster.

Pedigrus rex

Sometimes he is benevolent. Let’s see, I will render that woman pregnant after she has given up, exhausted from years of unsuccessful fertility treatments. Sometimes he is terribly unkind (Pedigrus Wrecks?). Hmmm, I think I will give a tetralogy of Fallot to that baby with severe ichthyosis. Hey, why not introduce yet another common mutation in another gene to the Ashkenazim? Sometimes he is astonishingly trivial in his malevolence, like making my pedigree software malfunction after having entered a hugely complex family history. Usually, though, he is emotionally indifferent, just going about his business of indiscriminately sowing the seeds of sadness, joy, shock, and love into the soil of human reproduction. We may try to appease him with sacrifices in our temples or try to understand his motives by consulting seers and prophets in our clinics. Mostly, though, he is beyond comprehension and placation.

This is not to lessen the importance of providing medical and scientific explanations. Many patients want technical information and often that is why they come to us. The beam of knowledge sheds some light for them but does not fully illuminate. They will integrate the scientific story into their own narrative – but on their own terms. It is only part of what they are seeking. Our duty to patients is not discharged once we have given them a recurrence risk or a name to their child’s condition. We need to help them create a psychologically meaningful narrative, a life story, that helps them cope and adapt to their situations, to grow and move on.

The Greek tragedies teach us that we have the ability transform sadness into love, shock into acceptance, fragility into strength, denial into hope. Suffering (pathos) turns into recognition (anagnorisis) and reversal (peripeteia). Humanity trumps divinity by telling stories that work emotional miracles. We can all be greater than gods.

“Mythology, in other words, is psychology misread as biography, history, and cosmology.”
― Joseph Campbell, The Hero With a Thousand Faces

Thanks to Emily Singh for help with the graphics.


** Let me digress here and correct a common “mythconception” about the term Immaculate Conception. Most people use the term to describe a conception that occurred without the benefit of sexual intercourse. This is quite incorrect; this is confusing Immaculate Conception with Divine Conception. Immaculate Conception refers to Mary, the mother of Jesus, and not to the conception of Jesus. In Roman Catholic doctrine, Mary, who was the product of conjugal relations between her parents Joachim and Anne after years of infertility, was the only human ever conceived without Original Sin on her soul, i.e., she was immaculately conceived. Jesus, on the other hand, was the product of Divine Conception by the Holy Spirit. He could not have been conceived in the usual style because that would have tainted him with Original Sin, a trait he would have inherited from Mary’ s husband Joseph. Mary learned of her pregnancy at The Annunciation, traditionally 9 months before Christmas on March 25th, when the Angel Gabriel announced to her that “the Holy Spirit would come upon thee” resulting in the miracle of divine conception in Mary’s virginal womb that was unblemished by sin or sex, and without Joseph’s, er, assistance (Joseph had his own visit from an angel who sort of explained the situation to him. So you  might understand why Joseph was deserving of sainthood.).

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Barriers or Filters?

 

Both good and bad can be said about Direct to Consumer (DTC) genetic testing. Some of the tests offered are probably better labeled Dreck To Consumer. Please, somebody, issue a cease and desist order for MTHFR testing. Or better yet, make it a criminal offense, punishable by sentencing to hard time at the Clockwork Orange Folic Acid Supplementation Rehabilitation and Penal Colony.

On the other hand, I am betting that established labs that currently offer clinically useful genetic testing will be migrating toward a greater presence in some form in the DTC market. This trend will be driven, by among other things, the demand on the part of some patients because of the convenience factor, the increasing uptake of BRCA testing by unaffected women, and by the potential income source it would create for labs. Whether clinicians like it or not, some form of DTC testing will probably play an increasing role in patient care in the near future. We will need to adapt to it, even if it makes some of us feel uneasy. My prediction is that we will initially see the most significant inroads in the area of DTC germline testing for cancer predisposition gene panels that include BRCA, Lynch, and their kindred.

Another  factor that could drive DTC testing is that genetic counselors are sometimes viewed by clinicians, labs, and consumers as barriers to genetic testing. For patients, just finding the time in their busy lives for an hour long appointment and verifying insurance coverage for the consultation is no mean feat. Then there is the genetic counseling ethos of nondirectiveness and genetic counselors’ obsessive urge to (over?)educate patients, which can result in some patients coming out of the session saying No Thank You to genetic testing for now, much to the chagrin of their referring care providers. Not to mention the lack of genetic counseling manpower in some parts of the country. From this perspective, you start to understand why some critics claim there can be a reduced uptake of genetic testing when a genetic counselor is an intermediary between patient and laboratory.

Genetic counselors might cringe at the thought of patients entering the genetic testing pathway without having worked through the emotional implications, and possibly partially blind to the clinical and personal implications of positive, negative, and uncertain results. We somewhat paternalistically view ourselves as guardians of our patients’ medical and emotional well being. While genetic testing may be important for patients, at least for unaffected patients genetic testing is rarely an urgent matter. It can take place today, next week, a few months, next year, or at some point in the vague future. Perhaps that is not so terrible because a test result delivered at the wrong moment might backfire by causing the patient to go into a psychological tailspin and possibly wind up avoiding risk reducing and screening strategies. In this way, genetic counselors are more like filters than barriers, helping ensure that nobody takes a deep dive into their gene pool without first pausing and taking a deep breath.

This response may be partially and subconsciously influenced by the fact that our jobs depend on the steady stream of patients seeking genetic testing. DTC also takes away some of the “gatekeeper” power inherent in our positions. Conflict of interest affects us in ways that can make us too uncomfortable to acknowledge that it might it shape our beliefs and attitudes.

Enter DTC into this drama, stage right. If you are a patient who has a few hundred bucks to spare, you can avoid carving a chunk of precious time out of your busy schedule to set up a genetic counseling appointment (and maybe 2 or 3 appointments, depending on the provider’s policy of requiring separate appointments for counseling, test, and results disclosure), avoid those incomprehensible (non)explanations of benefits from health insurers, and with saliva testing skip the unpleasantness of a blood draw (although saliva collection has its own icky issues). Those forward-thinking online genetic counseling services that are unaffiliated with specific labs may help mitigate some of these perceived barriers, but maybe not enough for the majority of patients. DTC labs make it pretty easy to sign up for genetic testing, no muss, no fuss, never needs ironing. If I am honest with myself, in some situations – and maybe more often than I am willing to acknowledge – the “hassles” of genetic counseling may very well serve to discourage a goodly number of patients from undergoing genetic testing.

One concern about DTC is the way that labs may try to portray their tests to patients. Labs typically strive to act in patients’ best interests and try to make sure that patients get the genetic testing they need. By and large I find them to be just as committed as I am to providing excellent patient care. But at the end of the day they are businesses, and even if they have noble aspirations, it is in their best interests for as many patients as possible to undergo genetic testing. This can subtly influence their advertising under the rubrics of patient education and patient empowerment.

The best example I can think of to illustrate this point is the websites of many labs that offer cancer genetic testing, DTC or otherwise, which often cite the high end of disease risks in hereditary cancer syndromes. Labs aren’t lying to patients when they quote 80-90% lifetime breast cancer risks or whatever. But it certainly makes their genetic tests look more clinically critical than, say, the 40-50% risks found in some studies. It’s not that the 40-50% risk is necessarily closer to the “true” risk than 80-90%. The point is that there a range of risk estimates out there and which risks one chooses to present can be influenced by many factors.

Here is one lesson I have learned from ~34 years of genetic counseling with about a jillion patients: Nobody undergoes genetic testing until they are emotionally ready. Sometimes that readiness is thrust upon the patient, such as when a patient is diagnosed with cancer and has to make treatment choices fairly quickly. But for unaffected patients, some emotional triggering event(s) needs to occur before they make a genetic counseling appointment. Examples of triggering events might include reaching an age when the patient’s own parent was diagnosed with cancer or when their own child reaches the age the patient was when the patient’s parent was diagnosed; having a false positive “scare” on a mammogram; a recent cancer diagnosis in a loved one; a media celebrity such as Angelina Jolie sharing a personal cancer story; reaching a certain stage in life where, as one patient put it, “It was time to start acting like an adult” (which I suspect for many people is the incipient stages of facing their own mortality); having a grandchild; or gazing at your child one day and realizing that you might want to be around for your kindergartener’s college graduation.

If my observation about what leads patients to genetic testing is correct, it will be interesting to see if affordable, convenient, DTC genetic testing will itself become the trigger event that nudges patients into undergoing genetic testing. Would this be good or bad? Will we see a rapid proliferation of genetic testing for hereditary cancer or other syndromes if DTC testing becomes widely available? Will this translate into clinical gains that are also economically cost effective, such as increased uptake of risk-reducing surgery and high risk screening? Who will watchdog labs to assure that they offer a quality, uniform, and trustworthy product that patients can depend on without first doing in depth research about depth of coverage, variant calls, and the other arcana of genetic testing? If recent calls for cancer genetic testing for essentially everyone, such as the proposal by Dr. Mary-Claire King or Canada’s Screen Project, become widely embraced, will DTC be the most efficient way to deliver the service? Will life insurers start requiring genetic testing before a consumer is eligible for a policy? How often will untrained care providers and patients misinterpret test results? Will it turn out that genetic counselors are barriers to genetic testing or are they filters who help ensure that the appropriate patients get the appropriate testing at the appropriate time in their lives? Will genetic counselors wind up largely becoming, as I have predicted for years, phenotype counselors who meet with patients after genetic testing?

Nobody knows the answer to these questions, although a lack of data has never been a barrier to strong opinions. This is the time to plan research studies that can help address them. The genetic counseling profession needs to continuously adapt and evolve. But it needs to do so without losing its soul.

 

Thanks again to Emily Singh for help with realizing the graphics.

 

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Are We Ready For This?

Recent advances in genetic testing technology have us poised on the brink of a new paradigm of prenatal diagnosis – prenatal screening for all genetic and chromosomal conditions. Okay, not all disorders, but lots. Non-invasive Prenatal Testing (NIPT), whole exome sequencing, and expanded carrier screening are close to being available and affordable to a large proportion of the population. This is the culmination of a trend that began with the introduction of amniocentesis in the late 1960s, followed by ultrasonography, maternal serum screening, microarrays, and cell free placental DNA in maternal serum. From a strictly technical standpoint, each technology, while far from perfect, was an improvement on its predecessors in terms of accuracy, detection, false positive rates, and the range of  detectable genetic conditions.

On the surface, this sounds like progress, and it is, in many ways. These technologies can contribute to the reduction of the incidence genetic conditions, some of which are pretty serious, a long-standing goal of medical genetics since its inception, as Nathaniel Comfort has pointed out. But technological advances often outstrip the ethical and social means with which to appropriately assess, modify, and utilize them in fair, just, and meaningful ways. So I ask these questions of the sage and thoughtful readers of The DNA Exchange: Just because we can perform prenatal screening for nearly everything genetic, should we? Who should be making this decision?

There are many competing and intertwined narratives about the history of prenatal diagnosis. Let me offer one such narrative to provide ethical and historical angles. During the 1970s and early 1980s, amniocentesis was primarily offered to women of “advanced maternal age” because of the well-documented increase in the incidence of trisomy with maternal age. At the time, in the US women 35 and older represented about 5% of the pregnant population, and this group accounted for about 20% of pregnancies with Down syndrome (this statistic has since changed considerably). While such a policy could be viewed as discriminatory and prejudicial against people with disabilities, the goal of the policy did not seem to be the elimination of genetic disability. Rather, the effect and likely the intent of the policy was to level the reproductive playing field for “older” mothers. During the 1970s, women made great strides in expanding their social and economic opportunities and in taking some measure of control over their reproductive lives with birth control and the availability of safe, legal abortion. Women could now readily attend most colleges and graduate schools, had more career opportunities, and did not feel as much social pressure to retire to motherhood after high school. However, one of the perceived obstacles for delayed childbearing was the greater risk of Down syndrome and other trisomies. Amniocentesis removed this perceived obstacle and consequently women felt freer to delay childbearing until such time as they felt that they and their partners were ready.

Over the decades, mission creep worked its way into prenatal screening. With the gradual incorporation of ultrasound and maternal serum screening into most pregnancies, regardless of maternal age, the detection rate for Down syndrome increased, and critics of prenatal diagnosis raised the specter of the theoretical elimination of all people with Down syndrome. While such an outcome never seemed likely for a variety of social, cultural, individual, and economic reasons, that could be viewed as the intent of prenatal screening. But still, aneuploidy represents only a small portion of all genetic and congenital disorders.

But it is a qualitatively different ethical story with universal NIPT and the expanding number of conditions it can screen for, the prospect of carrier screening for hundreds of genetic conditions for all couples, and talk of whole exome screening of fetuses. That is making quite a profound statement to and about people with a wide range of physical and developmental abilities.

We tacitly assume that the majority of pregnant women want such screening at the same time that we offer it to them. Many patients will  assume that because we are offering it, it must be a good thing. Because genetic counselors’ jobs can depend on the offer and uptake of such services, it affects our views and actions in ways that we often cannot fully appreciate or grasp. To some extent, we offer new testing because labs are offering it and because genetic counselors tend to be early adopters of new genetic tests. As much as we like to think that we are objective assessors of genetic technology who always put the best interests of patients first, the complicated human psyche makes for a messier reality. Our perspectives are distorted by being in the center of the storm. Go ahead and disagree with me if you want, but you are by and large wrong. That’s not me trying to sound superior; motivated blindness is a basic foundational principal of human psychology.

Psychological complexity aside, think of this. The medical profession is already doing a less than stellar job of presenting a realistic and unbiased picture of Down syndrome to parents. Remember, too, that more and more prenatal genetic testing happens without the involvement of a board certified genetic counselor and that parents are often not educated about these conditions until after they have received an abnormal test result. Not exactly the best time to seek out and weigh complicated information. Add a few hundred more conditions less common and familiar than Down syndrome, and you can see the makings of a goddamn mess.

So can there ever be an ethical justification for universal prenatal screening of (theoretically) all genetic and chromosomal diseases? Let me offer some suggestions that could serve as a starting point to address this question. One can argue that this framework or one like it should have been in place decades ago. I agree, it should have. I recognize that for people who are opposed to termination of pregnancy under any condition or for some of the staunchest disability advocates, prenatal screening will never be acceptable unless it somehow improves the lives of people with different abilities and their families. But I ask all sides to at least hear me out.

First, many parties should be involved in the discussion about wide scale prenatal testing, à la Cyprus and thalassemia screening. Prospective users, clinicians, labs, ethicists, religious leaders, legal experts, legislators, and most especially the community of people who are affected directly by the conditions in question (let me add “and others” since no doubt I am forgetting some important stakeholders). You will never get everyone to agree on all of the details, but there should be at least broad consensus about the most critical issues among the majority.

Second, more resources need to be devoted to improving the lives of people with genetic conditions and their families. Every newborn should  be able to live full, rewarding, loving, and enjoyable lives as much as humanly possible. This involves large-scale medical, technological, and social innovations and changes. Improving the social attitudes toward disability is a long, slow, frustrating journey but that should not deter us.

Third, related to the above, prenatal genetic testing should also offer some benefit people with the conditions in questions and their families, other than letting them have the same option as everyone else to terminate pregnancies. Right now, people with disabilities and their families get essentially zero benefit from prenatal screening. Or more accurately, very little research has been done to show any benefits.

Fourth, any new technology or test needs to be vetted by those who do not have a vested professional, financial, or personal interest in the technology or test. Intellectual, research, and financial conflicts of interest have ways of distorting our views in subtle ways that we are incapable of appreciating. This is extraordinarily difficult for us to understand and acknowledge (vide supra motivated blindness).

Fifth, better resources need to be developed for parents to become educated about the medical implications of genetic diagnoses, the range of developmental outcomes, the resources available to manage the condition, and the impact on families, particularly in lower socio-economic populations.

Sixth, this information needs to be provided to parents before they decide to enter the cascade of prenatal screening, not after they receive an abnormal test result. Parents have to carefully decide which if any condition(s) is important to their reproductive and family planning.

If all of these recommendations are in place, this will allow parents to make informed choices about whether or not they wish to go down the prenatal screening pathway and for which conditions. For parents who would never consider a termination under any conditions, they should have the option of screening only for those conditions for which prenatal knowledge can help the child and family, with better medical, psychological, or adaptational outcomes. For parents who have carefully weighed these issues and feel that there are certain conditions that they will choose to avoid if they can, then they should be supported in their decisions with safe, legal, and non-judgmental abortion services. For parents who are not interested in prenatal screening, they should be supported in their decision rather than being made to feel like they are sub-standard parents.

We can ignore my plea, just sit back and see what happens. But this would be a big mistake. Although genetic counselors obviously cannot address this issue by themselves, we are in the ideal position to take the lead in organizing, coordinating, and spearheading the discussion. We owe it to ourselves and to our patients.

 

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Summing Up the Consequences of Election 2016: 3 Things That Could Change the Practice of Genetic Counseling

It’s been two weeks, and everyone is sick of hot takes on Life in Trump’s America and What Is the Worst Thing That Could Happen? (um, I’m going with nuclear war, but take your pick). I know, I’m sick of it too. But elections have consequences, and, like climate scientists and immigration lawyers, we need to put some thought into what this could mean for our field.

 

The potential repeal of the Affordable Care Act is a concern for everyone working in health care, as is the threatened dismantling of Medicare. Possibly, critics of the ACA will discover that it is easier to campaign than to govern, and that voting to take away health care from tens of millions of people isn’t as much fun as it was in the good old days when they had the safety net of a presidential veto. But hey I’ve always been a Pollyanna. Too cheerful, that’s me.

 

Point one: prepare to practice in a climate where there is more inequality of access.

 

Chances are, prenatal genetics will be affected by an empowered and emboldened anti-abortion movement.   A president has some limited ability to make access to abortion more difficult through executive orders – President Bush signed regulations that gave everyone in the hospital, including orderlies and cleaning staff, the right to decline to do their job in cases involving abortion – but the main issue is the Supreme Court, where as president Trump will get an opportunity to redefine the balance of right and left if and when any of the reliable supporters of reproductive rights leaves the bench. Ruth Bader Ginsburg turns 84 on March 15th and I know millions of people join me in wishing her a happy birthday and many, many happy returns. The Court’s other octagenarian, Anthony Kennedy, has been behind decisions that chipped away at abortion rights, but has also declined several opportunities to overturn Roe v Wade, and anyone replacing him would almost certainly be more explicitly anti-abortion.

 

When asked last week on Sixty Minutes what would happen if Roe v Wade were overturned, Trump said that control of abortion law would then revert to the states, and that women who wanted an abortion might have to “go to another state.” This is correct (shocking but true) and you can make your own determination about the relative impact that would have on affluent and educated women  versus poor women, and teenagers, and other vulnerable parties.

 

The more complicated truth is that Roe v Wade is not going to disappear overnight, although there is a real and important long term threat. Should further changes create a Supreme Court majority ideologically opposed to abortion, they will have to wait until an appropriate case arises to make any changes. State lawmakers would no doubt be happy to present them with a test case, but making laws takes time, and then there are challenges and lower court decisions and demonstrations and pundits talking on the news before SCOTUS makes an actual decision. Even then, there is the hope that one or another of the anti-abortion faction hesitates to overturn 40+ years of precedent (See? You thought I was joking when I said I was an optimist).

 

A recent Supreme Court decision disallowing TRAP laws (targeted restriction of abortion providers) will stand, and so does the coalition that voided them, at least for now. For the moment, this should limit the chronic deterioration of access to abortion in Southern and Midwestern states that we have seen over the past decade. I believe it remains important to monitor changes that adversely affect our patients’ ability to obtain an abortion related to genetic findings, including decreased coverage, increased cost, logistical obstacles and changes that necessitate travel.

 

Point two: be vigilant about the threat to reproductive rights, but don’t expect dramatic changes in the near term.

 

Here’s something we don’t talk about enough: there is evidence to suggest that prenatal testing itself is likely to be a target of the anti-abortion movement. In fact, it already is. The National Conference of Catholic Bishops issued a directive in 2009 that forbids prenatal diagnosis “if undertaken with the intention of aborting an unborn child with a serious defect.” This decree limits the use of prenatal testing in some Catholic hospitals, a growing segment that includes one in six hospital beds in the country today. Many Catholic institutions including schools and hospitals refuse to pay for insurance plans that cover prenatal testing, restricting availability for all their employees, regardless of their own beliefs.  Other employers with an anti-abortion agenda could do the same thing.

 

More evidence that prenatal testing is on the radar screen of the anti-abortion movement: state laws have been advocated, and in two instances passed, that specifically forbid women from seeking a termination for reasons of genetic defect. These laws don’t get a lot of ink because they are a) unconstitutional (under Roe) and b) virtually impossible to enforce, since they require a prosecutor to prove motivation. This doesn’t mean they are not important. They were written by people whose agenda it is to limit abortion by any means, but they were chosen as a vehicle because they tap into a larger uneasiness about prenatal diagnosis.

 

The laws may not be enforceable, but they are chilling. Abortion is already medicine’s stepchild. Why would doctors or hospital administrators be eager to offer a procedure where they have to think twice about whether or not they could get in legal trouble? And the laws show an intent that could be more fully realized through other means. You may not be able to prove a woman’s intent in seeking an abortion, but you can certainly document a counselor’s intent if he or she offers the option of termination after a prenatal diagnosis. Will we see attempts to limit what can say to our patients? If this seems impossible to you, consider that 35 states currently have script laws detailing what a woman must be told before she can have an abortion, and a number of those require providers to give inaccurate and misleading information. In 6 states, women must be ‘informed’ that personhood begins at conception. In 5 states, women must be ‘informed’ that there is a link between abortion and breast cancer. If they can require us to lie to patients, don’t rule out the possibility that they can forbid us to speak.

 

Advances in prenatal testing are revolutionary.   NIPS is the fastest growing medical test in the history of medical tests. We will continue to see changes that widen the scope of what we can diagnose prenatally and improve our ability to predict outcomes more accurately, and at an earlier phase in pregnancy.  This is going to reduce the incidence of a whole range of genetic conditions — for those who use the  test. But improvements in prenatal diagnosis don’t improve access; in fact, improvements in prenatal diagnosis are fueling the debate over what types of prenatal testing are acceptable. If the courts and the politicians and the public don’t accept the idea that pregnant women have a right to prenatal testing as a part of normal prenatal care, then laws and limits to insurance reimbursement may put it out of reach of many Americans.

 

If prenatal testing is only available people who have enough money, or the right education, or live in certain parts of the country, it is not just unfair to individuals but fundamentally changes the societal impact of offering the tests. The necessary consequence of offering prenatal diagnosis and the option to choose only to some people, is that the birth of a child with a genetic defect or disease will gradually change from being something that can happen to anyone to something that only happens to ‘some people’. Don’t we already see this happening to some extent with Down syndrome? People are right to think hard about the potential consequences of prenatal diagnosis, but restricting prenatal testing so that access is unequal doesn’t limit the harm, it multiplies the harm.

 

Point three: we need to make the case that genetic testing is a part of good prenatal care and that every pregnant woman has a right to it, if she chooses.

 

There are other issues to consider but these three jump out at me as points of concern for genetic counseling practice as we move forward with a new administration. What can we do?  Hope for the best. Make our own spaces – schools, clinics, workplaces – into welcoming and inclusive environments for those who don’t feel safe in the current climate. Be vigilant, and bring changes that affect patient care to public attention. Talk to other counselors. Talk to me; I would love to hear your take and your stories.

 

 

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What Is Genetic Counseling?

Until recently, I have felt pretty comfortable calling myself a genetic counselor. I have a graduate degree in genetic counseling, passed a long and difficult certification exam, and I am licensed by the great state of Washington to practice genetic counseling. It’s on my business card, the directory of my office building, and it is my official job title. I have been providing genetic counseling to patients for 33 years. I had not lost a wink of sleep worrying over what to call myself until about two years ago when I started to develop a nagging identity crisis when, on this very web site, my fellow DNA Ex’er Allie Janson Hazell suggested that maybe it is time to re-think if we should be calling ourselves genetic counselors. It was a minor itch at first. But now it’s grown into a persistent problem that I can’t stop trying to scratch, like the mysterious treatment-resistant, psychologically rooted foot disease that afflicted the John Turturro character in the recent HBO mini-series The Night Of.

But let me pose the question differently than Allie did. Why give up a good and beloved name? And I don’t even want to begin to think about the bureaucratic nightmare of rewriting state licensure laws. Instead, maybe, just maybe, it is time to debate whether we should redefine genetic counseling and the genetic counselor’s scope of practice. After all, genetic counseling is what genetic counselors do. If many of the daily activities of genetic counselors are not captured by the current definition of genetic counseling, then perhaps it is time to rethink it.

I acknowledge some personal resistance and intellectual conflict of interest – fellow DNA Ex’er Michelle Strecker and I were part of the National Society of Genetic Counseling Task Force that wrote the modern definition of genetic counseling in 2oo5 and published in 2006 (the first formal definition was published by the American Society of Human Genetics in 1975 ):

Genetic counseling is the process of helping people understand and adapt to the medical, psychological and familial implications of genetic contributions to disease. This process integrates the following:

• Interpretation of family and medical histories to assess the chance of disease occurrence or recurrence.

• Education about inheritance, testing, management, prevention, resources and research.

• Counseling to promote informed choices and adaptation to the risk or condition.

 

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I like that definition, with its integration of clinical, educational, and, most critically, psychological aspects of genetic counseling. I am not sure I want to see it relegated to a historical footnote. Paradoxically, it could be that I am subconsciously trying to unconvince myself about the need for a new definition as much I am trying to convince the blog’s readership that it is time to consider updating it.

But I have to admit that maybe the modern definition is not so modern anymore. Genetic testing has become, in some instances, downright cheap. Everybody and their cousins are offering genetic testing. You can even obtain genetic testing, for all intents and purposes, without the involvement of a physician, genetic counselor, or any other health care provider. Roughly one in five genetic counselors works in a laboratory setting. Genetic counselors work as test interpreters, policy advisors, genetic ancestry specialists, insurance advisers, laboratory managers, account managers, sales staff, mutation database curators, laboratory liaisons, report signers, educators, and researchers. There are probably genetic counselors who are performing activities that I can’t even think of or grasp. Although for now we are still largely anchored in the clinic, we are drifting on a professional tide away from it. The definition probably still reflects the activities of many genetic counselors, but it also may not capture what a lot of genetic counselors do in their practice.

Here is the scope of practice for genetic counselors from the website of the National Society of Genetic Counselors (a more detailed listing of genetic counseling competencies can be found at the Accreditation Council For Genetic Counseling):

Genetic Counselor Scope of Practice:

a) obtain and evaluate individual, family, and medical histories to determine genetic risk for genetic/medical conditions and diseases in a patient, his/her offspring, and other family members;

b) discuss the features, natural history, means of diagnosis, genetic and environmental factors, and management of risk for genetic/medical conditions and diseases;

c) identify and coordinate genetic laboratory tests and other diagnostic studies as appropriate for the genetic assessment;

d) integrate genetic laboratory test results and other diagnostic studies with personal and family medical history to assess and communicate risk factors for genetic/medical conditions and diseases;

e) explain the clinical implications of genetic laboratory tests and other diagnostic studies and their results;

f) evaluate the client’s or family’s responses to the condition or risk of recurrence and provide client-centered counseling and anticipatory guidance;

g) identify and utilize community resources that provide medical, educational, financial, and psychosocial support and advocacy; and

h) provide written documentation of medical, genetic, and counseling information for families and health care professionals.

Some of the core questions and issues are, as I see them:

  1. Do the definition of genetic counseling and the scope of practice accurately reflect what goes on in clinics and in other work settings?
  2. Should the definition be broadened such that the very act of genetic counseling incorporates some of the newer activities of genetic counselors? This would suggest that the definition of genetic counseling could include some practices that are not involved with direct patient interaction.
  3. Is the definition still adequate but the scope of practice needs to be reworked? Or is the scope of practice adequate but the definition needs some sprucing up?
  4. How do we not lose sight of the psychological component to genetic counseling?
  5. Distinguishing between genetic counselors (roughly equal to the scope of practice) and genetic counseling (roughly equal to the definition).
  6. Remembering that genetic counseling ≠ genetic testing.
  7. Any definition will have an implicit ethos that needs to be carefully considered. The current definition is clearly centered on the psychological and physical well-being of patients.

Perhaps it is time to create another task force to address these questions and issues. I second Allie Janson Hazell’s suggestion that any such group should be international in scope; North America does not have a monopoly on genetic counseling. Of course, that could lead to an ungodly large committee; Resta’s Rule Of Committees is that a committee’s effectiveness is inversely proportional to its size. Decades of experience have taught me that the maximal effective committee size is five (no, I did not arrive at that number by a rigorous scientific process; it’s just a natural fact revealed to me in a trance one day).

I suggest a tiered process. A small task force, ideally international, investigates these questions and issues, and if the definition and/or scope of practice are found wanting, then they draft a new definition and/or scope of practice. This would then be passed on to a larger committee consisting of several representatives of the major international genetic counseling organizations, who could then choose whether to pass it on to their larger membership for comment.

The task force should include a clinical person, a lab person, and two or three other genetic counselor specialties. Grizzled veterans like me should be kept off this committee. We may unknowingly be too caught up in the old vision, too self-convinced that dammit, we do genetic counseling the right way. This project needs counselors who are early mid-career to late mid-career, the group who are the natural successors to us silverbacks, ancient shamans, and village elder wise women.

The scope of practice does not have to be particularly terse. But the definition should not be too wordy; think of how convoluted and awkward the old ASHG genetic counseling definition was. The current definition is about the right length, and, practically speaking, the definition can stand on the first sentence alone without the bullet points below it. I think that it is a tough act to follow, but sometimes the show must go on.

Oh, and while they are at it, they really should consider changing the wording to the more grammatically correct genetics counselor and genetics counseling. And let me interject another curmudgeonly opinion. I think that there are valid points made by both sides of the “Are they patients or are they clients?” debate, and I personally go back and forth freely. But I pray to God that we never use the phrase “consumers of genomic medicine.” I don’t care what you tell me about the business side of genetics and medicine; we should never label people as primarily income generating entities.

What do the Good Readers of The DNA Exchange think about this? Complete the very unscientific poll below, and share your thoughts in the Comments section.

The NSGC Annual Education Conference – only 2 weeks away – will be an ideal venue to further this discussion. And speaking of the AEC, note the announcement just below the poll about an opportunity to meet some of your favorite DNA Exchange bloggers at the upcoming Annual Education Conference in Seattle.

 

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GCs Got Talent! A Genetic Counseling Talent Show/Benefit For The Genetic Support Foundation At The NSGC Annual Education Conference in Seattle Friday, September 30 at 8:00 PM

An Evening of Music, Comedy, Dance, Storytelling, Arts and Crafts As Performed By Our Very Own Genetic Counseling Colleagues

Meet Some of Your Favorite DNA Exchange Bloggers, Judges Laura Hercher & Michelle Strecker, And The Evening’s Emcee, Yours Truly, Kool Papa Bob!

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 Illustrations by genetic counselor Dena Goldberg – “Dena DNA

Do you have a good story to tell or a talent to put on display? We would love to hear from you. There are still a few slots available. Story tellers and performers should email talent@geneticsupportfoundation.org to learn more.

 

For more information about the event, and ticketing, visit https://www.geneticsupportfoundation.org/gcs-got-talent-the-comic

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