Genetic Future

Associated Press reports that Germany will likely soon pass regressive laws limiting the use of genetic testing:

The German parliament approved legislation Friday limiting the use
of genetic testing in an effort to prevent the technology’s abuse.

The law, which was debated for more than seven years, must still go
before the upper house of parliament, but it is not expected to meet
any resistance.

Under the law, genetic tests can only be carried out by a doctor
and require the full consent of all parties involved. That makes it
illegal to conduct anonymous paternity tests and anyone found in
violation could be fined up to euro5,000 ($6,525).

The law further limits the use of genetic testing on fetuses to
purely medical purposes
, meaning parents are prohibited from using it
to determine the sex of their unborn children. In addition it prohibits
the use of genetic testing for indications of a predisposition to
illnesses that appear only later in life
, such as breast cancer or
diseases of the nervous system.

The law also addresses dissemination of information obtained
through genetic testing, including preventing employers and health
insurance companies from demanding an employee or potential client
undergo a genetic test or accessing results from previous tests. [my emphasis]

I wonder whether the rest of Europe will soon follow suit.

This restrictive, paternalistic approach is the safe option for governments, but it comes at a cost in terms of restricting individual choice and potentially slowing down the development of genetic technology. I’m all for careful and well-reasoned regulation of genetic testing, and legal protection against non-consensual or forced genetic testing is prudent – but a complete ban on direct-to-consumer genetic testing is a backward step.

Comments

  1. #1 Appalled
    April 24, 2009

    “A complete ban on direct-to-consumer genetic testing is a backward step.” Actually, it’s a step in the right direction, appearing “backward” to you only because of your upside-down sense of morality and unhealthfully skewed, soulless worldview. Don’t worry; I’m praying for you.

    The only thing to be gained from allowing parents to test their unborn children for things like gender or predisposition to breast cancer is more sex-biased infanticide and the elimination of people who *might* develop a disease down the line by which point there might very well be excellent therapies or even cures. Really, it’s downright stupid to screen and then kill a baby (“fetus”) that carries traits we find undesireable. As I’ve said before, if governments allow people to kill babies that carry an allele that puts them at greater risk for breast cancer, why not also allow for screening and murder of babies that bear alleles that are responsible for them being shy or bald, conditions many people also think of as undesireable? It’s a terribly slippery slope.

    Also, we know so little about epistatic and epigenetic mechanisms and effects that you could be killing fetuses that might have very desireable traits (or that might never develop a condition despite being genetically predisposed) just because they have the wrong genes. In short, you could throw the baby out with the bathwater if you allowed for screening.

    Of course, the only argument I need against genetic testing is that every human being has a soul, and it’s not our place to decide how much they are worth based on a sequence of purines and pyrimidines. Those who do advocate for genetic testing are arrogant, naive, and dangerous. They should really stop trying to profit by exploiting the fears of parents and trivializing the dignity of human life.

  2. #2 OmegaMom
    April 24, 2009

    Um. How on earth does one follow up after a comment like Appalled’s?

    Just so you know, Appalled, there are a number of genetically linked diseases that cause immense pain and short lives for babies born with them. If *NOT TRANSFERRING* an eight-celled embryo because it tested positive for one of those diseases is evil, I’m on that side.

    Anyhoo. My first question was, how will this law deal with genetic illnesses that are sex-linked?

  3. #3 SciPhu (Nils Reinton)
    April 24, 2009

    Daniel. There are European countries with even stricter laws already I’m afraid (Norway is an example). One must only hope that given time, the hysteria surrounding the “dangers of knowing your own individual genetic make-up” will cease.

    Appalled. You make some good points, but I think you are barking up the wrong tree. Your criticism is on genetic testing prior to ART/IVF. This post acknowledges the need for regulation of such testing (read this sentence again: “I’m all for careful and well-reasoned regulation of genetic testing, and legal protection against non-consensual or forced genetic testing is prudent”). DTC-testing on the other hand is performed (mostly) on consenting adults – two different things.

  4. #4 Mary
    April 24, 2009

    Oh–they have no work or insurance protections? Huh. I thought that was just us (US us).

    What’s up with genetics over there? The GM corn issue got the scientists all fired up, though–maybe they’ll write another Sternly Worded LetterTM as we call them here.

    http://gmopundit.blogspot.com/2009/04/german-scientists-wake-from-their.html

  5. #5 Steven Murphy MD
    April 24, 2009

    Ok,
    Some say paternalistic. I say concerned. But, you cannot prove that regulations will slow develoment of technology. I challenge you to prove that.
    -Steve

  6. #6 Paul Jones
    April 24, 2009

    When they catch up with the US in DTC genetics they will abandon this protectionism, as they are doing with GMOs. (notice how deCODE just went bust…)

    Often times economically concerned parties will pin on a fig leaf of “moral concern” to justify their self-seeking.

    I prefer honesty.

  7. #7 Dirk
    April 25, 2009

    The worst thing is that medical genetic testing results can only be given to the tested person by the physician who first did the mandatory consultation:

    “Das Ergebnis einer genetischen Untersuchung zu medizinischen Zwecken darf … nur der betroffenen Person und nur durch die verantwortliche ärztliche Person oder eine Ärztin oder einen Arzt, die … die genetische Beratung im Auftrag der verantwortlichen ärztlichen Person durchgeführt hat, mitgeteilt werden.”

    ..no more Direct-to-Customer medical DNA Tests! In my opinion, such a law will inhibit the utilization of new scientific results to improve health care, which would otherwise allow individual citizen to know their individual medical future.

  8. #8 Steven murphy MD
    April 25, 2009

    Dirk,
    Genes are not your medical future.
    Steve

  9. #9 Antoni Jaume
    April 25, 2009

    in Spain it is allowed for medical reasons to test embryos before their implantation, in order to avoid some genetical diseases. The latest addition is a type of breast cancer, as it has been published in recent days.

  10. #10 Dan Vorhaus
    May 1, 2009

    Looks like it’s official: http://www.dw-world.de/dw/article/0,,4201588,00.html

  11. #11 caltuffy
    May 14, 2009

    Let’s put it this way… I have taken graduate level biology and statistics courses. I’m capable of interpreting the results of studies and how they apply to my genetic makeup. Usually the effect is very small. But I don’t have the time or money to go to medical school.
    Any law that tells me that I don’t deserve to know my genetic makeup because I couldn’t afford medical school is a fundamentally unjust law, and one that I have no ethical problem with breaking.

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