Monday, 27 May 2013

Week 8 - Should our genetic information remain personal?



"Genetic information" is information about genes, gene products, or inherited characteristics that may derive from the individual or a family member.
Genetic information about individuals can reveal very important and sometimes private information about ancestry, activities, health, and health prospects.
Because there are so many potential uses of genetic information, and because social norms about how such information should or should not be used have yet to develop, it is very difficult to make judgement in this area. Some businesses, however, are already positioning themselves to help consumers maximize beneficial uses of genetic information while protecting privacy.
Passing on information to help prevent serious crime or indeed to establish a guilty party may on occasions be necessary.
Genetic study may also affect other members of the family. Therefore assurances need to be given to the person consenting to the tests that there will be no breach of confidentiality. This is especially important in small communities where confidentiality is a major issue.
Because no human being has a perfect set of genes, every person is at risk for genetic discrimination. In fact, there are well-documented public instances of genetic discrimination.
Young men and women who are carriers for a given disorder may be discouraged from courting each other, because their children could be born with a fatal genetic disorder.
Some individuals avoid genetic testing out of fear it will affect their ability to purchase insurance or find a job.
In addition access to genetic information about employee can give information about personality, overall performance, competence, health and vulnerability to work related diseases and life durability.
For more information please read this article: http://www.genome.gov/10002077

Please answer following questions:

Do you think that genetic information should be personal?

What is fair to discriminate?
}        Personality-to the level affecting employment
}        Competence at duties
}        Age
}        Health
         Smoking
         Medical history ?
         Family history ?

What other aspects of life in your opinion can be affected by making genetic information accessible?

19 comments:

  1. I have to admit I am indeed increasingly concerned about the privacy issues. I don't think that information like age or smoking are particularly private - the first one is already revealed in most of the documents and the second one is probably to difficult to hide, to consider it private. However I don't see the point in making my genetic information or family history available for instance to my employer.

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    1. "... I have to admit I am indeed increasingly concerned about the privacy issues ..."

      I believe that we do not have too much choice. With genetic trails we by nature spread every day (single hair etc.) we would all need to hide into some underground concrete shelter to eliminate every single possibility of being investigated easily :)

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    2. I agree that some information is already available to the employer during recruitment steps.
      Anyway access to the genetic information by employer could have some positive consequences- they would not let you work in conditions that may put you in risk of developing some disease reveled by the genetic tests

      Delete
  2. > Do you think that genetic information should be personal?

    Obviously it is personal and it should remain private. I can't imagine it any other way unless it's necessary as evidence or for some specialist profession (maybe an astronaut). There should be protections against gathering and using genetic information.


    > What is fair to discriminate?

    This was explained in the article, the characteristics which are a result of choice and can be changed or worked on are generally not protected by anti-discrimination laws. The things which can't be changed should not be the sole reason for discrimination. For example it shouldn't matter what age you are as long as you're fit for the job. Although we still often use age discrimination because it's easier.

    > What other aspects of life in your opinion can be affected by making genetic information
    > accessible?

    Different kinds of food and medicine could be targeted towards populations of people with common genetic traits.

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    1. "> What is fair to discriminate?

      ... the characteristics which are a result of choice and can be changed or worked ..."

      I can agree that behaviours that are harmful for others and for the environment could be a subject for a "fair discrimination".
      This usually happens anyway with some society pressure means applied naturally.

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    2. "> What other aspects of life in your opinion can be affected by making genetic information
      > accessible?

      Different kinds of food and medicine could be targeted towards populations of people with common genetic trait"

      I thing that genetic information is already available for targeting genes. It is not revealed to the public though. It is only used for scientific purposes.

      Delete
  3. Do you think that genetic information should be personal?

    Yes, I believe that genetic information should be personal but I also accept that is unlikely to happen. We leave “genetics traces” easily – a single hair, a piece of nail and the genetics science is getting more and more powerful in finding huge amount of information from those little “grains of us”.

    Because of that reason we need to learn how to live being prepared that genetics knowledge about ourselves can be used without our permission and even worse without our knowledge.

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    1. I don't thing that it would be legal to access someone's genetic information without his knowledge and permission. I see however possibility that it would be demanded by law to present genetic information in the way like fingerprints are collected at the moment.

      Delete
  4. I partially agree with Wiktor that genetic information should remain private. Partially because I would like to add “as long as their owner doesn’t want to share it”. I think that when somebody share his genetic information he should can control whom this information is accessible for – similarly to rules enforced by GIODO.

    Very interesting for discussion is a topic about discrimination - especially at work. I don’t think that anybody can enforce too many rules for private business – in our context rules about disallowing for using genetic information during employment process. When any state wants to help for people with worse gens it can create some social programs - similarly to programs for disabled people. I suppose that my opinion is different from opinion my colleagues so I’m preparing for discussion.

    Very accurate is for me Waldek’s remark that getting somebody’s genetic information seems to be simply easy.

    ReplyDelete
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    1. I agree with you that we should have a right to reveal genetic information if we want to and we should have some kind of control of the level of availability of our genetic information to the others.
      I do not agree however with your second statement. I don't think it would be fair - even in the private sector- to discriminate someone because of the possibility of developing condition in the future. Having a mutation that is linked to some kind of disease does not mean that someone will definitely get this disease.

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    2. For such discussion first we should exactly define term “discrimination”. I think that when I have to choose between two people genetic information is only one criterion – even it is not the most important, it is simply is.

      I give you an example – let assume that you want to get money from private sponsor for training to be the Olympic Master in running on 100 meter distance. Do you think that he can’t say “no” because you aren’t black? I think that they are his money and it is his own decision. And it is not a discrimination in my opinion, but economical calculation.

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  5. Do you think that genetic information should be personal?

    I think genetic information should be personal and any kind of access to genetic information of some person should by allowed only with knowledge and agreement of this person. Of course except some criminal cases where genetic information can by evidence but in that cases research and information should be limited to that corresponding to criminal case.

    What is fair to discriminate?

    I think is not fair to discriminate at all. If I where HR worker I would only hire old, dark skin, homosexual , smoking or drug addicted people. Specially those who grow in some minority like gypsies and do not have high education. Because we should be fair and is doesn’t matter who you are only attitude maters.

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    1. I agree with you that as long as is does not affect work skills other aspects should not matter for the employer.

      Delete
  6. Do you think that genetic information should be personal?

    I think that genetic information should be personal and nobody should has access to that kind of information because that kind information can be used against us.

    What is fair to discriminate?

    In my opinion you can do what you want to do only if you don't hurt others people.
    And about discriminate at work I agree with Piotr we shouldn't discriminate anyone if someone has good knowledge and is good at work it is no matter who you are :)

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  7. I agree that our genetic information should remain personal but we should have a right to reveal this information and still be fully protected form discrimination by law like e.g. GINA act

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  8. Genes make people, and people have preferences, and these preferences should be respected. This means that genes must be respected, as the originators of preferences. They cannot morally be bought and sold. Let us not? begin a new era of slavery, via the 'ownership' of human genes!

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  9. I used to work in a company that was selecting groups of people for various marketing campaigns. Just to give you a small glimpse of the scale of this let's just say that I was working with about 22 millions of records that could me matched to individuals inside the UK alone! And the data set consisted of about 60 attributes per line, so I could see whether a specific person is married, how much children he has or... how much cats he has and how often he goes on vacation!

    That really got me thinking about protecting my private information...

    I do think that genetic information should be treated as personal and protected just like other personal data is; and if for some reason you would want to allow someone to use such information it would require your direct consent.
    A completely different story is what can one do if they acquire such data, as for now I cannot think of many examples where such information could be useful.

    Generally speaking I am against all discrimination based on the features that you have no influence on. Genes are an example of such characteristics. Nowadays it is illegal to discriminate on the basis of race, national origin, skin colour , sex or religion (this one is probably the only feature that people can change), so I think that we should extend that list by one additional position.

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  10. I agree with most comments here that genetic information should be personal and protected against accessing by unauthorized people. Genes are immutable characteristic and it's not fair to judge anybody based on it. Besides genes are very complex issue and I'm afraid that wrong interpratation may ruin someone's life.

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