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Personal Genomics is Booming, But There's a Nationwide Shortage of Genetic Counselors Who Can Make Sense of that DNA Data (wired.com)

An anonymous reader shares a Wired report: When Dan Riconda graduated with a master's degree in genetic counseling from Sarah Lawrence College in 1988, the Human Genome Project was in its very first year, DNA evidence was just beginning to enter the courts, and genetic health tests weren't yet on the market. He found one of the few jobs doing fetal diagnostics for rare diseases, which often meant helping young families through the worst time in their lives.

What a difference 30 years makes. Today, with precision medicine going mainstream and an explosion of apps piping genetic insights to your phone from just a few teaspoons of spit, millions of Americans are having their DNA decoded every year. That deluge of data means that genetic counselors -- the specialized medical professionals trained to help patients interpret genetic test results -- are in higher demand than ever. With two to three job openings for every new genetic counseling graduate, the profession is facing a national workforce shortage.

[...] Pharmaceutical and lab testing firms are routinely hiring genetic counselors to make sure new screening technologies for these targeted drugs are developed in an ethical way. According to a 2018 survey conducted by the National Society for Genetic Counselors, a quarter of the workforce now works in one of these non-patient-facing jobs. A smaller study, published in August, found that one-third of genetic counselors had changed jobs in the past two years, nearly all of them from a hospital setting to a laboratory one.

56 comments

  1. Counselors? by Megol · · Score: 0

    Analyst I'd understand but why would genetic data need counseling? [/stupid]

    1. Re:Counselors? by Gilgaron · · Score: 4, Insightful

      I think the idea is that an analyst usually presents technical data to experts of a different domain, whereas a counselor could present technical data to the laity. Probably also rooted in the early days of the field when instead of "here's what kind of cancer you ought to be on the lookout for" it was "this is the horrible and slow way your loved one is going to die, and here's how you can mitigate that while going bankrupt"

    2. Re:Counselors? by Antique+Geekmeister · · Score: 4, Informative

      Family planning to decide whether to have children or adopt could be a very good reason for genetic counseling, especially if the potential parents have medical issues. Preventive health care for people at high risk of various genetically caused diseases could also be a legitimate reason for genetic counseling.

    3. Re:Counselors? by puck01 · · Score: 3, Insightful

      Genetic counselors function as analysts.

      It should be highly emphasized many of these tests are of questionable utility in the real world. How to interpret the results is often not at all intuitive. Its a wild west type of situation and I generally wouldn't recommend having any of these done without proper guidance.

    4. Re:Counselors? by Rick+Schumann · · Score: 1

      You don't. It's about as credible at this point in time as someone who has the title 'Xenobiologist'.

    5. Re:Counselors? by Anonymous Coward · · Score: 1

      Genetic counselors are a lot like real estate agents, settlement agents, CPA's, tax lawyers, etc. Yes, you could almost certainly do everything this person does, but the amount of time you will save for a very moderate fee is significant.

      On a personal level, my wife and I had genetic counseling before we had kids (we're older than most newly weds). The counselor took family medical histories and combined that with our genetic test results to give us a list of probabilities for various outcomes. All very interesting, and something that anyone with access to information and knowledge of probability could do, but the price to have it provided was much less than the time it would have taken us to do this same thing ourselves.

      Like you say, analysis is a big part of their job, but as others have mentioned, they are the patient facing side of genetic testing. You need a person who is trained and able to present very bad news to folks in certain cases.

    6. Re:Counselors? by swell · · Score: 1

      "It should be highly emphasized many of these tests are of questionable utility in the real world. How to interpret the results is often not at all intuitive."

      This is an understatement. According to today's Scientific American, "There are two potential issues arising from the question of their results' accuracy. The first is somewhat trivial: Has the sequencing been done well?" This is not a simple matter. Different labs will give different results. One lab failed to recognize that the DNA submitted was from a dog. False positives for disease are common in consumer lab results.

      "Assuming the tests are done accurately, some discrepancies can still arise from differences in the companies' DNA databases. " These databases are limited and differ from each other.

      The part of the article relevant to 'genetic counselors' is this: "If we assume the data generated is accurate, then the second question that arises is on the interpretation. And this is where it gets murky..." The counselor or analyst must deal almost entirely with probabilities. There is rarely a single gene that codes for an interesting trait; there may be many and not all of them have been located yet. An example given is that you may have two genes that are associated with blue eyes, and yet not have blue eyes.

      The author concludes: "Genetics is a probabilistic science, and there are no genes "for" in particular. I have severe reservations about the utility of genetic tests that indicate one individual's propensity for certain conditions outside of a clinical setting; if you don't have a PhD in genetics, these results can be misleading or even troubling."
      https://www.scientificamerican...

      --
      ...omphaloskepsis often...
    7. Re:Counselors? by LynnwoodRooster · · Score: 1

      Don't you understand the amount of grief that will be felt by millions when they realize they are not a "minority" race, but just plain old Western European?

      --
      Browsing at +1 - no ACs, I ignore their posts. So refreshing!
    8. Re:Counselors? by Megol · · Score: 1

      Now that's a nice non-sequitur.

    9. Re:Counselors? by Megol · · Score: 1

      I understand that the tests may be useful even though my impression is that most tests are done without good reason. It's just that I don't understand exactly why there would be a need for something combining analysis and patient interaction. Perhaps it's due to the imprecision and uncertainty of the data and the interpretation of it?

  2. I don't think I want this by Anonymous Coward · · Score: 2, Insightful

    Now I need to keep all my relatives on a short leash just because I value my privacy.

  3. Computers? by Oswald+McWeany · · Score: 0

    Do we need a lot of genetic counselors? Can computers not do this for us more accurately?

    --
    "That's the way to do it" - Punch
    1. Re:Computers? by L'Ange+Oliver · · Score: 1

      Part of the job of a genetic counselor is patient facing.

    2. Re:Computers? by Anubis+IV · · Score: 1

      Not yet, but everything described in the summary sounds like it’s ripe for replacement by computer. There may be a temporary boom in the field, but it’s already too late to get in. By the time people choosing majors today could get in, I’d wager that a lot of that stuff will have been automated, leaving the only decent jobs as the ones that are doing new analysis to feed into the computers.

    3. Re:Computers? by EvilSS · · Score: 2

      Not really. A big part of their job is to explain to patients what the results mean, what they don't mean, and answer questions they have. This is the problem 23andMe had with their health reports. The reports showed the technical interpretation but a lot of people didn't understand what it meant, even though it was laid out fairly comprehensively. Their forums were littered with "according to the test I have __________" when what the reports really said was that they had a SNIP that research showed might be related to ________________ and that research supported a x% genetic component to the condition, with y% being lifestyle or just random bad luck. People need people to help explain the actual impact of the results to them. Right now computers aren't up to that task. Not every condition that comes out of these tests is a binary you-have-it-or-you-don't genetic disorder.

      --
      I browse on +1 so AC's need not respond, I won't see it.
  4. lineage of electromagnetic goo by Anonymous Coward · · Score: 0

    it's our spirit that defines us.. cease fire stand down,, there are mothers & children in every town the world around.. thanks again..

  5. Re: Repulsive by Anonymous Coward · · Score: 0

    Gotta break some eggs to make that tasty omelette. Waiting for ubermensch.

  6. How about a Reality Counselor? by turp182 · · Score: 4, Insightful

    Here's how it works.

    You will end up looking a lot like your mother or father, depending on your birth gender.

    You will have the problems your parents have (propensity for dementia, alcoholism, diabetes, cancer, etc.).

    If your grandparents live past 80 take care of yourself and you can too (eat well or exercise, one or the other works, generally). Pay attention to dementia, get your paperwork in order depending on how you want to handle that, just in case.

    If you want, ask potential child-birthing partners about their family history. I wouldn't suggest this, let love lead the way and have a good time.

    --
    BlameBillCosby.com
    1. Re:How about a Reality Counselor? by Anonymous Coward · · Score: 1

      let love lead the way and have a good time

      That is really terrible advice; there is no harm in having more information, especially when it comes to creating new life.

      My wife and I had a several long discussions about the ramifications of us having children and have decided to opt-out. Our potential heart-ache now (we are both in our late 50s and currently fine with being childless) is a small price to pay to prevent the terrible heart-ache a descendant would have to deal with.

    2. Re:How about a Reality Counselor? by Oswald+McWeany · · Score: 2, Insightful

      Here's how it works.

      You will end up looking a lot like your mother or father, depending on your birth gender.

      You will have the problems your parents have (propensity for dementia, alcoholism, diabetes, cancer, etc.).

      If your grandparents live past 80 take care of yourself and you can too (eat well or exercise, one or the other works, generally). Pay attention to dementia, get your paperwork in order depending on how you want to handle that, just in case.

      If you want, ask potential child-birthing partners about their family history. I wouldn't suggest this, let love lead the way and have a good time.

      I know a few people who were adopted that don't know who their biological parents are (and by extension grand parents). It's not that uncommon in current society for the dad not to be known to a lot of people in poor groups of society.

      Even in my own case, I don't know who one of my biological grandfathers is. (I was able to determine he wasn't biologically related to us through basic understand of dominant and recessive genes... but also because he was away fighting in WWII the whole year when my father was conceived and born).

      So lots of people have missing ancestry information- and even for those that don't, recessive genes can go hiding for many generations.

      --
      "That's the way to do it" - Punch
    3. Re:How about a Reality Counselor? by turp182 · · Score: 1

      I thought about these type of situations. My post was for people who have such family relationships and knowledge.

      Generalized for the majority.

      To your point, I now have a wider understanding of the use cases of genetic testing.

      I have an African-American friend who says he will never use Ancestry.com since he can trace his lineage cleanly back to slavery (but not past ocean crossings of such). I've mentioned genetic testing as a possible method of going further back (I recommended the National Geographic option).

      --
      BlameBillCosby.com
    4. Re:How about a Reality Counselor? by Anonymous Coward · · Score: 1

      Here's how it works.

      You will end up looking a lot like your mother or father, depending on your birth gender.

      You will have the problems your parents have (propensity for dementia, alcoholism, diabetes, cancer, etc.).

      Not true. If my mother is carrying gene of diseases showing only in males (poor single X)
      then I will be OK (double X), my brother will be not OK, and my sons will be not OK.

      Basic question - why I should give so much info to outside world?
      In next season we will watch actuaries reaching for those data or insurance companies treating my results as proof that it is preexisting condition ...

      Now i can swear, go for polygraph test that I did not know about this "condition"

    5. Re:How about a Reality Counselor? by Anonymous Coward · · Score: 0

      Well that's because you each must have broke the ice about your genetic dispositions, and that you did not want to pass them along.
      OP is saying that's probably not an early, first, or 'flame kindling' conversation to have when initially hooking up. But later, sure.
      Have fun first he's saying.

      And in a way, yes, your love for each other, and for humanity's future DID lead the way.

    6. Re:How about a Reality Counselor? by Anonymous Coward · · Score: 0

      Yes, why can't this service be only for the customer? Why are there more side-customers?
      If I buy a lunch... the taste & nourishment it does not get shared with onlookers. Sure maybe they can keep a watch on what favorite types of meals are ordered, but they don't get the actual meal too.

      I love the 'digital revolution', but the ability to very easily share everything is beyond the pale. And quickly revealing humanity's penchant to set up their fellow man in canabalistic farms.

  7. It's easy! by Anonymous Coward · · Score: 0

    "Looking at your family photo and medical history, you're gonna be a fat bald diabetic loser. That'll be $2,000 cash - insurance won't pay. Have a nice day!"

    No really, my wife got one of those as part of some study and was told we wouldn't be billed. Guess what? The $3,000 - now a $2,000 bill is coming in and they are demanding payment. I'm lawyering up!

    And the medical community bitches about the lawsuits. They ask for it.

    1. Re:It's easy! by Anonymous Coward · · Score: 0

      "Looking at your family photo and medical history, you're gonna be a fat bald diabetic loser. That'll be $2,000 cash - insurance won't pay. Have a nice day!"

      How'd you get hold of my results?

  8. Re:GoFundMe for Fauxcahontas? by Anonymous Coward · · Score: 0

    Sad to see that the trolls now have mod points.

  9. Shortfall? by monkeyxpress · · Score: 4, Insightful

    It always intrigues me how the job market is considered to have 'shortfalls'. There is no shortfall of genetics councillors. There is a shortage of genetics councilors at the current market price for them.

    It's also funny how this sort of thing only applies to the little guys. I'm yet to hear a politician or business leader suggest that rising CEO/banker wages are a sign of a lack of competition for executive jobs, and that policies should be taken to increase supply in those professions.

    1. Re:Shortfall? by Anonymous Coward · · Score: 0

      In general I agree with you, but find myself wondering if there is in fact some career for which there is a genuine shortage. Nursing, for example. Yes, the existing nurses would like to be paid more, and high wages would drive students into nursing schools, but today, this very day, there may well be a greater need for nurses than the current population of trained nurses can support. All that said, what qualifications do "genetic councilors" really need? Liberal arts degree + soothing voice + conciliatory attitude?

      CAP: Caresser. Well played, Slashdot. Well played.

    2. Re:Shortfall? by Nidi62 · · Score: 2

      In general I agree with you, but find myself wondering if there is in fact some career for which there is a genuine shortage.

      Commercial pilots. Federally mandated retirement at 65 and an increase in requirements for ATP-CTP certification (and a reduction in military pilot numbers-partially due to increased automation and reliance on unmanned systems) means there is a directly measurable and predictable shortage in the coming years.

      --
      The only thing necessary for evil to triumph is for it to be pitted against a slightly greater evil
    3. Re:Shortfall? by tsqr · · Score: 1

      It always intrigues me how the job market is considered to have 'shortfalls'. There is no shortfall of genetics councillors. There is a shortage of genetics councilors at the current market price for them.

      From TFS: With two to three job openings for every new genetic counseling graduate.... That doesn't sound very much like there are a lot of trained genetic counselors who decided to do something else because the pay in their chosen field just isn't high enough.

      Or, maybe you mean that the reason that there is a shortfall of graduates in the field is that the pay isn't high enough to attract students to the programs. The median salary for genetic counsellors is over $75,000, which is in line with other health professions, and I'm guessing that the work is a lot less physically and emotionally demanding than being a registered nurse.

    4. Re:Shortfall? by Anonymous Coward · · Score: 0

      "It always intrigues me how the job market is considered to have 'shortfalls'. There is no shortfall of genetics councillors. There is a shortage of genetics councilors at the current market price for them."

      I see. There are tons of Ferraris and Porsches out there, just none in my price range.

  10. 23 and who? by Anonymous Coward · · Score: 0

    I thought the FDA already stepped in on this years ago and said 'No' to the idea of blanket DNA test result counseling/analysis (for good reasons too)?

    They did recently clear a specific test, but there won't be much counseling required for those results?

  11. Re:GoFundMe for Fauxcahontas? by Anonymous Coward · · Score: 0

    She didn't lie, the results are out. Shes 1/32 to 1/512 Native American. ... Depending on how you read the results.

    DNA counselors sounds like a terrible idea. I don't trust them to get it right for right reasons or wrong reasons.

  12. Yeah, fine... but don't stop there! by Anonymous Coward · · Score: 0

    We need to make kawaii cat-girls a reality!

    1. Re:Yeah, fine... but don't stop there! by Anonymous Coward · · Score: 0

      There you go. (should be SFW)

  13. Comment removed by account_deleted · · Score: 0

    Comment removed based on user account deletion

  14. You donâ(TM)t need one by Anonymous Coward · · Score: 0

    Itâ(TM)s a fake profession like chiropractors. Just look up the gene yourself and how it works.

  15. low quality degree & profession by Anonymous Coward · · Score: 0

    A few years back I was doing my law degree at a large public university (top-20 program) and a few elective health-law classes were combined with students in the genetic counselor program. The course content and the professor who taught the class was low quality. The students were not impressive; a few of them seemed to have joined the program to further their goals of preventing abortions by counseling people away from them. One hopes that eventually that sort is weeded out.

    Genetic testing is pretty awesome, I took full advantage of it when having my kids. It required meeting with a genetic counselor who added little value but added cost and wasted time.

  16. Re:GoFundMe for Fauxcahontas? by Anonymous Coward · · Score: 0

    She didn't lie, the results are out. Shes 1/32 to 1/512 Native American. ... Depending on how you read the results.

    DNA counselors sounds like a terrible idea. I don't trust them to get it right for right reasons or wrong reasons.

    Bullshit.

    She "consultant shopped" until she found a shill willing to pimp himself out and give her the answer she wanted.

    Instead of finding a recognized geneology expert, she used a non-expert who was on the Harvard faculty with her. Why not use a real genealogist?

    Why did Harvard drop mention of a Native American faculty member when Fauxcahontas's lies were exposed?

    Why did Fauxcahontas herself claim that she knew she was Native American only because of her "high cheekbones" if she wasn't lying to Harvard in order to get ahead?

    Why won't Fauxcahontas answer questions about whether or not she's ever used other DNA services if she didn't go "DNA shopping"?

  17. Re:GoFundMe for Fauxcahontas? by Anonymous Coward · · Score: 0

    She didn't lie, the results are out. Shes 1/32 to 1/512 Native American. ... Depending on how you read the results.

    DNA counselors sounds like a terrible idea. I don't trust them to get it right for right reasons or wrong reasons.

    Fauxcahontas speak with forked tongue:

    Meanwhile, the Globe has also obtained a portion of Warren’s 1973 application to Rutgers, where she attended law school. That document specifically asks: “Are you interested in applying for admission under the Program for Minority Group Students?’’ Warren answered “no.’’

    In addition, a newly unearthed University of Texas personnel document shows that Warren listed herself as “white’’ when she taught at the law school there from 1981 to 1991.

    Hell, The Boston Globe even admits there's no evidence that Warren is 1/32 Cherokee - like she used to claim, until it was debunked.

    And is almost certainly the box Fauxcahontas checked to get listed as a "Native American" at Harvard

    Note well: "A person having origins in any of the original peoples of North America and maintains cultural identification through tribal affiliation or community recognition"

    Even if Fauxcahontas is 1/32 Native American, she never "maintain[ed] cultural identification through tribal affiliation or community recognition".

    No matter how you put it, she LIED to game the racial preference system.

  18. Your MOST PERSONAL data by Rick+Schumann · · Score: 3, Interesting
    2018: Voluntarily giving up literally the most personal data about yourself you can possibly give anyone.
    Zero guarantees it doesn't end up in a Government or Law Enforcement database, or at the very least bought up by the likes of insurance companies, so they can find some excuse to jack up your rates or flat-out deny you coverage.

    Also, reminder:

    GATTACA

    Don't fall for it, folks.

    1. Re:Your MOST PERSONAL data by Anonymous Coward · · Score: 1

      Voluntarily giving up literally the most personal data about yourself you can possibly give anyone.

      Within a few decades decades (once the cost comes down a bit more), authoritarian countries like China will simply require that all citizens and visitors (tourists) submit a DNA sample to a central database. That is, in the relatively near future, providing a DNA sample to the government won't be voluntary - at least not for much of the world's population.

      But let's say you happen to live somewhere where getting your DNA (genome) sequenced is voluntary. What to do? Well, increasingly, there are compelling medical reasons to get sequenced - being aware of adverse drug reactions, etc. So, fairly soon, refusing to get sequence will be like refusing to get vaccinated - you'll be giving up substantial health benefits.

      But then let's say you really want to keep your DNA (genome) sequence secret. How feasible is that really? Currently, the technology exists to sequence a person's genome from a single cell. At the moment, it's pretty expensive and not common. But all of us are shedding cells (containing complete copies of our genomes) all the time. And then there are plenty of items in our trash (discarded tissues, sanitary pads, etc) that have lots and lots of DNA. So, if a large powerful entity like the US government wanted a sample of your DNA, and they somehow didn't want to just put a gun to your head and demand a saliva sample, then there are lots of easy ways they could get it.

      The fundamental point is that if you don't want people misusing your DNA sequence then you need to advocate for laws that protect you downstream. There's really no point in trying to prevent people from trying to get your DNA (genome) sequence - that's just to easy to get. What's needed is strong laws that protect you even knowing that everyone who wants your DNA (genome) sequence already has it.

    2. Re:Your MOST PERSONAL data by Rick+Schumann · · Score: 1

      Words words words words words

      Talking about it is where 'advocating for laws' begins. So don't lecture me.

    3. Re:Your MOST PERSONAL data by Kjella · · Score: 2

      2018: Voluntarily giving up literally the most personal data about yourself you can possibly give anyone.

      If you had to choose what would be spread online, a sex tape or your DNA profile I think 90%+ would pick the DNA profile. For most it's just a list of genetic predispositions and half will have less than average. And it's something you're born with, like do you make fun of the people with visible handicaps? I understand the insurance angle, though in a civilized country with universal healthcare that's not really a big problem and very little of that is strong enough percentages to plan for as an individual. Like if you got a 3% probability of cancer and the other guy 1%, aren't you still planning for the 97% probability that you don't? I'm not necessarily saying it's a good idea, but I don't think people's deepest secrets and biggest skeletons in the closet are lurking in their DNA.

      --
      Live today, because you never know what tomorrow brings
    4. Re:Your MOST PERSONAL data by Rasatsu · · Score: 1

      You are underestimating what China, et al. will be using this for.

      They're very likely to modify the one-child policy to include genetic testing and allow parents who do screening for not just diseases, but also intelligence and such, to have extra children.

      In vitro combined with dna sequencing is already able to give you eugenics+, with CRISPR they'll have access to eugenics++ with none of the moral objections we have.

    5. Re:Your MOST PERSONAL data by burningcpu · · Score: 1

      If you had to choose what would be spread online, a sex tape or your DNA profile I think 90%+ would pick the DNA profile

      Luckily this isn't binary...

  19. Pharmaceutical ethics? by Anonymous Coward · · Score: 0

    "Pharmaceutical and lab testing firms .... make sure new screening technologies for these targeted drugs are developed in an ethical way. "

    Pharmaceutical companies ensure ethical anything? Now that's specious horseshit if ever there was some. The corruption of the early curiosity and drive to alleviate maladies has been subverted and consumed by the insidious need to turn everything into a profit maximisation scheme.

  20. All of the DNA companies have to go bankrupt now by Anonymous Coward · · Score: 0

    Kellyanne Conway says they are junk science... And throw out all the convictions, empty the jails!

  21. Re:GoFundMe for Fauxcahontas? by Anonymous Coward · · Score: 0

    She didn't lie, the results are out. Shes 1/32 to 1/512 Native American. ... Depending on how you read the results.

    She "consultant shopped" until she found a shill willing to pimp himself out and give her the answer she wanted.

    Instead of finding a recognized geneology expert,...

    Wow, that has me laughing out loud. Carlos Bustamante (who's lab did the analysis) is one of the best geneticists in the world with exactly the relevant expertise. The report is actually really good. Very much worth a read. They found five segments of Native American ancestry in Elizabeth Warren's genome. The largest is a 4.7 megabase segment on chromosome 10 - which is really pretty big (i.e. very unlikely they got it wrong).

  22. Re:GoFundMe for Fauxcahontas? by Anonymous Coward · · Score: 0

    "Instead of finding a recognized geneology expert, she used a non-expert who was on the Harvard faculty with her. [stanford.edu] Why not use a real genealogist?"

    You mean somebody from a _good_ school, instead of these 3rd rate Harvard and Stanford ones?