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Businesses Medicine Science

Personal Genomics is Booming, But There's a Nationwide Shortage of Genetic Counselors Who Can Make Sense of that DNA Data (wired.com) 56

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.

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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

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

    • Re:Counselors? (Score:5, Insightful)

      by Gilgaron ( 575091 ) on Monday October 15, 2018 @08:05AM (#57479334)
      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"
    • Re:Counselors? (Score:5, Informative)

      by Antique Geekmeister ( 740220 ) on Monday October 15, 2018 @08:27AM (#57479390)

      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.

      • by Megol ( 3135005 )

        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?

    • Re:Counselors? (Score:4, Insightful)

      by puck01 ( 207782 ) on Monday October 15, 2018 @10:17AM (#57479720)

      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.

      • by swell ( 195815 )

        "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 fro

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

      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

    • 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?
  • by Anonymous Coward

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

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

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

    • by EvilSS ( 557649 )
      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 b
  • by turp182 ( 1020263 ) on Monday October 15, 2018 @08:40AM (#57479422) Journal

    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.

    • by Anonymous Coward

      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.

    • Re: (Score:3, 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

      • 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 o

    • by Anonymous Coward

      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"

  • Shortfall? (Score:5, Insightful)

    by monkeyxpress ( 4016725 ) on Monday October 15, 2018 @08:55AM (#57479456)

    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.

    • by tsqr ( 808554 )

      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

  • by Rick Schumann ( 4662797 ) on Monday October 15, 2018 @10:38AM (#57479816) Journal
    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.

    • by Anonymous Coward

      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 me

      • Words words words words words

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

      • 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.

    • by Kjella ( 173770 )

      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

      • 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...

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