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Presymptomatic Testing

Submitted by Jenny Jiang on 18 November, 2005 - 5:57pm. Med-Tech Blog

(In response to both articles)

In recent years, the possibility and sensitivity of genetic screening have increased dramatically by technological advances introduced by top researchers and scientists. Such technology includes the Genelex’s GeneMedRx drug-interaction test, a new service in which one can “customize” his/her combination of medication according to his/her genetic makeup. Another new tool is the HIV test that promises not only portability but also faster result, features that current HIV testing lacks. Currently, biotech companies are applying similar technology for screenings of heart diseases, cancer, and other diseases.

But imagine, what if we can detect these diseases before we can observe or experience any actual symptom? What if one’s genetic predispositions for diseases such as diabetes and cancer can be determined just by a simple blood test? Or better yet, what if we can use this knowledge of our genetic makeup and overcome our likelihood of getting a disease through technology and science?

These are just some of the ideals that many scientist and researchers are working toward in the next generation of genetic screening – presymptomatic testing. The concepts and technologies behind the HIV and drug-interaction testing are just the beginning of this new phenomenon. Promises of presymptomatic testing include the possibility of increasing longevity and reducing cost and time. But despite the benefits, I believe that many issues will certainly arise from the new information presented by presymptomatic testing and have a profound impact on the population.

The first issue that I would like to emphasize is the likely formation of new group and individual identities and practices arising out of this new knowledge. There already are, for example, breast cancer groups (e.g., Breast Cancer Support Group, Cochrane Breast Cancer Group) whose members meet to share their experiences, lobby for their disease, educate their children, and so on. So how likely is it to have groups forming according to one’s genetic makeup? Very likely. It is not hard to imagine groups formed around the chromosome 1, locus 123456, with a mutation on site 78901. Similar to the current breast cancer groups mentioned above, such groups will have medical specialists, narratives and other resources to help them experience, share, and understand their “fate”. Moreover, knowing one’s genetic profile will result in a constant drive to intervene with one’s “fate” through behavior modifications, therapy and such. People will be persistently monitoring and fixing their deviations.

The second issue that I would like to point out is that with the formation of new groups, classification will certainly arise. Although cultural classification such as race, gender, and age will not disappear, the meanings and the practices that constitute them certainly will change with the knowledge of individual’s genetic makeup. In the future, will we redefine the meaning of race by examining one’s genetic makeup instead of one’s skin color?

This brings me to my last point that by having our biological information revealed, the likelihood of genetic discrimination will be greatly increased (www.genome.gov/11510227). Insurance companies can use the information against participants by denying or limiting their health insurance because of their sensitivity to certain diseases. Discrimination can also occur if employers obtain individuals’ biological information and hire only workers with the best health prognoses.

Now, I am certainly not trying to denounce the practice of genetic screening, just that there are many issues that we should all think about.

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Screening vs. engineering

Submitted by Mariela on 29 November, 2005 - 2:51pm.

To add another wrinkle in the bleek future that this blog entry lays out for us, I want to point out that all of the changes discussed above make me imagine a society where poeple will have strong incentives to provide the best genetic start for their children.

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The Nobel Sperm Bank

Submitted by Jenny Jiang on 2 December, 2005 - 1:23am.

Mariela, that is an interesting and somewhat scary point that you have brought up. What is even scarier is that if we take a look around, the practice of eugenics has already started and has actually existed for quite some time now. For example, when a female is picking her potential mate out from a crowd, she will often be most attracted to a male that is well-built, tanned and tall – all characteristics of a well-nourished and healthy mate that has the potential of creating a genetically healthy offspring. Historical events such as the Holocaust and the “Nobel Sperm Bank” incident are other great illustrations of eugenics.

The “Nobel Sperm Bank” incident occurred in 1980’s when Robert Graham, an inventor and multimillionaire, was pessimistic about humanity’s future and decided to take matters into his own hands – by impregnating women with sperm donated by Nobel Prize winners, successful businessmen, star athletes, mathematical prodigies and such. Within almost two decades, Graham’s “genius factory” produced more than 200 children.

There is a book titled The Genius Factory that documents this eugenics movement and even shares a few stories of the “genius babies” that resulted from the sperm bank. After skimming through the book, I was intrigued by some of the fascinating points that the author made concerning race. In a world where people are constantly striving for “perfection” and the “norm,” does a “master race” exists?

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Fix Discriminating Insurance Companies

Submitted by Abby on 21 November, 2005 - 1:20am.

It’s very scary imagining that the scenarios you’ve described are extremely possible and likely for the future. Discrimination due to one’s genetic makeup is just the icing on the cake, isn’t it? With information such as genetic makeup circulating, lives can be completely altered, particularly by insurance companies. Insurance companies already have health screening, and the genetic makeup information would give them more reason to reject some people. There is already a high percentage of the population that does not have health insurance, whether it be by choice or due to insurance being unaffordable. This new information would just make it more difficult to obtain much needed insurance. On a similar note, I think that it’s about that time we start considering the incorporation of a national insurance program, and actually take steps to do so. We do have programs such as Medicare and Medicaid, but these programs only assist a certain population. What about the others that just fall outside of the set standard? There are many that want to provide their family with health care, but lack of insurance keeps them from health care facilities because they know the of financial burden it can create.

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"Issue"

Submitted by thanhtran on 20 November, 2005 - 6:16pm.

You have mentioned many issues you are concerned about, but I am confused about some of your points.

The first "issue" you mention was the formation of interest groups. I don't see how this would be as issue, especially when you mention the benefits of which "whose members meet to share their experiences, lobby for their disease, educate their children."

Also, I think that insurance companies will definately descriminate, but don't they already do that now? Perhaps they will take it to a whole different level, but do you think that they should be nice and sell their insurance to just about anybody? The total number of people and the probabilities of inheritting certain genetic diseases has been pretty constant. Unless there's a plague would I worry that insurance companies would become even more selective about selling the insurance. Insurance companies want to make money, and to do that, I don't think they will sell less insurance. Perhaps they might sell insurance at a higher price.

I agree with how genetic screening will change behaviors, and as far as modifications, there's no doubt that if it were a choice, it would be abused. We see on television all the time people who change their physical features through surgeries. Sometimes I wonder about the messages biological alteration sends to its viewers. I am torn between one's rights to do what you want with your body, and learning how to accept yourself the way you naturally are.

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Re: "Issue"

Submitted by Jenny Jiang on 21 November, 2005 - 12:44am.

The point that I was trying to make and that I was unclear about is that there are many factors that we need to realize and perhaps prepare for as genetic screening becomes more popular. Yes, the formation of interest groups can be quite beneficial but this will certainly redefine the meaning of race. Now whether that is a good thing or not is up for debate.

As for the point on insurance companies, I agree with you that discrimination can already be seen and that genetic screening will take it to another level. However, because of these reasons, I believe it is important for everyone to realize these issues when considering genetic testing. There have already been many cases of “genetic discrimination” because of the participant’s unawareness of the consequences. Furthermore, I think insurance companies and even the government need to start formulating ideas on how to handle biological information in the most “fair” manners for the future.

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