Comments on: Genetics, Privacy, and The Web

By: Zac

Zac — Fri, 11 Jun 2010 18:26:07 +0000

I think that the web 2.0 culture needs to be cautious when dealing with the privacy of genetic information. I say this because there are too many unknowns. We do not know what all the uses of this information are, and that goes the same for all the ways this information could be abused. There is nothing bad about starting slow when it comes to privacy. The information needs to be protected, and when speaking of genetics this is also exposing of those who are related to you. So in order to protect the privacy of unknowing persons the issue of privacy needs to be taken very seriously.

By: Shannon Johnston

Shannon Johnston — Wed, 02 Jun 2010 01:08:51 +0000

Today’s youth is obsessed with information. Whether it is through blogging about what they just ate for dinner or reading up on what a friend did last Friday or editing articles on Wikipedia, people love grabbing onto as much information as they can on the internet. I believe that if the internet were to provide tools to find out and share information about our genome, most young people would just skip past the disclaimers and go right to sequencing. I, even knowing the ethical debates, was quite intrigued by the MyGenome application at first reading because it allowed you to compare with famous people and your friends. It wasn’t until a few seconds later until I got over the “cool” factor and realized the huge possible repercussions of knowing the information. A lot of people probably would not get over the cool factor until it was too late and they already had the information in their hands.
So no, I do not believe that today’s youth would be more cautious with genetic information. If a person does not feel uncomfortable posting compromising pictures of themseves or telling the world why they just broke up with their boyfriend on their Facebook status, why would they feel any more remorse for sharing these pieces of information — they seem just as innocuous as any other blurb. The problem is that if a future employer decides against hiring you because of a picture, you can learn from your mistake, delete the content, and move on. However, if you share your genome, your progeny from now until forever would have to live with those consequences. Mates may avoid you because you have a certain genetic predisposition, just as people avoid dating those with STDs now.
This type of technology should not even be available to today’s youth. It is far too dangerous, and people will take advantage of it if given the chance.

By: HeidiC

HeidiC — Wed, 12 May 2010 07:16:13 +0000

I believe that genetic information is crucial to the advancement of society. There is so much information packed into the genome that is waiting to be discovered. This information can be used to improve the quality of life for many individuals and can also significantly advance society with an explosion of new knowledge of our blueprints. We should not stop the advancement of knowledge simply because we are afraid of negative outcomes. Information is very powerful and can always be used for both good and bad, which is why it is important that we discuss these issues before they arise so that we can prevent any inappropriate or unjust use of the new information. Although we do not know all of the future risks that may arise with these new technologies, we also could argue that we do not know about all of the future benefits. However, this does not mean that we should not proceed with care as time and our knowledge progresses.
Ethical implications of this new information include the right to autonomy and principle of justice. Would our right to autonomy be taken away if more information was learned about us and we were seen as a danger to society? Like Margaret mentioned, I was also reminded of the movie Minority Report when reading this blog post. Could we be flagged or even arrested if we had the genetic potential to commit a crime? In addition, we have seen throughout history a tendency for people to be treated unjustly because of genetic differences such as race or having a disease or disability. Expanding our knowledge of our genetics could potentially increase this discrimination or it could eliminate it because the general public may understand these differences more, which may enable them to better understand and accept others with differences. Both will most likely occur and while more information about ourselves becomes available we should make sure to educate the general public so that new information is not misunderstood and used for negative purposes. We must also make sure to enact laws protecting people with genetic differences so that there is no injustice as a result.

By: Alexandra

Alexandra — Wed, 12 May 2010 06:54:11 +0000

I believe that getting one’s genome mapped is a science that could help us all live longer, healthier lives. We would have the opportunity to learn early in life what we should eat, how to stay healthy, and what preventative medications we should take to stop the genetically passed diseases and health problems to which we are predisposed. However, for all its benefits, this information could cause a great deal of harm if not properly protected from misuse and public knowledge. If a genome is brought into public knowledge that person is limiting the autonomy of his present and future family, who share the some or most of his genes. Family members would have less medical options to choose from if insurance companies reject them and their medical coverage is limited. While everyone has claim right to know one’s own genetic identity, no one has the claim right on someone else’s genetic profile. Therefore, if advances in medicine are to be made by the utilization of genomes, this information must be protected more securely than medical records in a hospital. An individual may be access to a printed record of his genome, but could never reveal it to the public, and could only show it to a family member with his/her consent.

By: jcuadra

jcuadra — Wed, 12 May 2010 05:57:19 +0000

The human genome project is something that I have always been curious about, yet never fully knew what it was about. In reading this article I feel almost the same as I did about the article with tailoring a child to the way the parent wants. In this project, although there is great potential to understand many of the diseases, etc. that many of us encounter, do we really want to have a tag attached to us displaying for the world to know all of our genetic issues? I would think that many would do this just to know themselves better, to perhaps brace themselves for what may be ahead of them. But to do this to basically blast it on the web and try to make others comfortable is unethical. Society is no longer allowing us to be created and maintained naturally.

By: mbpadilla

mbpadilla — Wed, 12 May 2010 05:51:06 +0000

Even though this might sound biased coming from a science major, I really do believe that even though you have no idea were your information is sent off to, that its important to know your genetic make-up. People might say, well you don’t really need to know, but the fact of the matter is your in charge of your own body and knowing your genetic makeup is important. Lets say you wanted to have a baby and you wanted to know what genetic makeup you have to offer your baby. If you find out that you have the harlequin genes then you become aware of potential predicaments you would like to avoid. Knowing is better than not knowing.
On the other hand you run the risk of not knowing where your genetic makeup information ends up. Your autonomy is stripped away and in a sense you are stuck in a cycle because if you don’t send in your sample then you’ll never know your genetic makeup but if you do send in your sample you’ll never know where the result would end up. Overall I trust that people are generally morally good human beings and that if anything my genetic information would be used for a great scientific research project, but then again I am also a helpless romantic. I believe skepticism is key to not being fooled but its also a downfall of distrust. During most research people do not know that they are being tested and it leads to great discoveries. Overall if Ross’s prima facia duty of non maleficence best applies to this situation, no one is being harmed if you send in your sample.

By: Paul Bruno

Paul Bruno — Wed, 12 May 2010 05:37:08 +0000

There are serious limitations to the genetic mapping which have not quite been worked out by scientists yet. People need to know the difference between a “possible link” on a certain gene for a disease and not mistake this with actually being diagnosed with a particular disease. This lack of education for genetics could pose possible widespread fear about certain genes which could pose problematic for people obtaining health insurance in the future which would justify an insurance company not insuring an individual. However, it would be unethical to not insure an individual for a particular genetic predisposition which they had no active choice in. Also, many genes are linked in ancestry which means that if one person were to have their genes mapped, they would also be likely violating their own family members privacy when they may have not agreed with the genetic mapping in the first place. If the implications of certain genes did point out the predispositions in a family tree, there would be serious ethical implications which would could jeopardize the health and happiness of a large group at the cost of one individual. This could also lead to insurance issues for other family members regardless if there genes had been mapped or not. If certain genes suggested increased contraction of a certain disease or for increased capacity to commit crimes, the government could justify preemptive measures against an individual who would have the ability to act against those predispositions or take the necessary precautions against these predispositions.

By: Margaret

Margaret — Wed, 12 May 2010 05:12:18 +0000

After watching the first video, the questions being raised reminded me of the Tom Cruise movie ‘Minority Report’, in which the police had the power to see into the possible near future and prevent horrendous events, such a murders, from occurring. Yet, after a hunt for a wrongly accused man everyone came to the realization the psychic forces could only see what could be, but people were unpredictable and could change their futures. Although genes and psychics don’t match, and people cannot choose their genes, we are still playing with the same fire. The ethical issue here is when is it acceptable to remove someone’s liberties simply because they are predisposed to one thing or another. Although proponents of the idea would like us to believe it would help prevent individuals from developing such diseases, in many cases it is out of our control. For instance my family has a history of heart conditions and high cholesterol, yet should the government or my insurance company keep me from eating a cheeseburger even thought I show no symptoms? Or if I was found to have the gene that predisposes me to violence, should I be locked away to protect the rest of society, such as the people arrested in the movie for crimes they never committed. When it comes to health issues we tend to panic and forget the individual has the right to autonomy. So while they may have every predisposition under the sun, and take no preventative measures, it is their body and it should not be up to others to say how one should act or be treated. Although it sounds like a bad science fiction movie, we do need to monitor how we obtain and work with information our genes provide. In a worst case scenario if we remove people’s independence completely, even though it is for a good cause, we are no longer treating people as humans, but as pieces of hardware based on their genetic makeup, and who would want a world like that?

By: Alex Harkins

Alex Harkins — Wed, 12 May 2010 04:42:49 +0000

I don’t think anyone would argue against the fact that there are potential benefits to obtaining information through genetic testing. With certain information regarding potential risk to health issues, one can be more prepared. However, the article discusses reasons why having such information is not a good thing, and keeping it a secret is difficult. Confidentiality raises issues in the Health Care Industry in every aspect, and in this case, it deals with discrimination due to genetic knowledge: gene discrimination. Potential employers or health insurance providers could discriminate towards someone who has a family history of heart attack when that person has no control over that characteristic of his/her family and shouldn’t be measured by it. That is in no way ethical, and the way we are headed if we aren’t careful.

By: Lanesha

Lanesha — Wed, 12 May 2010 04:24:40 +0000

I believe that individuals who complete these genetic tests are at risk of genetic discrimination. Currently, life insurance rates can raise to very expensive rates if an individual is inflicted with health problems. Now imagine if your genetic mapping was readily available. Employers could obtain this information and making hiring decisions based on such information. This genetic discrimination could potentially place large numbers of people in unemployment. The same is applicable to health insurance and carriers. I believe that with innovative science thee has to be modifications/adjustment to present policies in order to address both the intended and unintended consequences of such advancements in science/technology/ and medicine.