Gender & Ethnicity

Gender:

     Although genetic differences in people certainly include gender differences, it is an aspect often overlooked in media discussing the effects of the HGP on the public - many discussions of the HGP and its applications tend to be gender neutral. This may be due to the mistaken assumption that gender differences are not factors that affect the choices that people make in relation to genetics and illness. The HPG application in discussion can only be called "gender neutral" if the consequences are equal for both sexes - in both benefits and problems.

However, there are in fact big differences in gender when looking at genetics:

Genetic diseases that only affect one sex - An example is the X-linked disorder Duchenne Muscular Dystrophy, which affects only boys.
     This is because there are two sex chromosomes: an X chromosome (from mother) and a Y chromosome (from father). For a female, two X chromosomes (XX) are needed and one of each (XY) is required for a male.
     In most cases with XX, the normal X chromosome is equally strong as the mutated X, so they can mask the effects of the mutant X and produce a normal girl. These women are called "carriers" because they carry a hidden mutant X which might be passed on to their sons.
     In XY, if the X chromosome is mutated, the normal Y is not powerful enough to mask the mutation to give a normal boy, so the boy has the disease from the X mutation.

Parental sex (maternal or paternal) factors affect the child - Some conditions depend on the sex of the parent that transmit the mutated gene. For example, the age of the mother can play a big role in producing a child with Down's syndrome and the age of the father affects the chances of having a child with Marfan's syndrome.
     There is also the case of "Genetic Imprinting", where if the mutated chromosome is inherited from the mother, it can cause one disease (e.g. Angelman Syndrome), but if the exact same mutation is inherited from the father, a different disease results (e.g. Prader-Willi Syndrome).

Abnormal sex ratios - In some conditions (such as Fragile X Syndrome), where one would think the sex ratios to be the same (50:50), these mutations affect one sex more than the other; and in the case of Fragile X, boys have a higher chance of having the disorder.

Women and Pregnancy - And finally there is the more obvious case that conditions that give troublesome pregnancies affect women and not men. This point can also be extended to say that women are the only users of prenatal diagnosis, therefore when the HGP is used to develop more advances prenatal diagnosis techniques, women are the only individuals directly affected by this.

     There is also another differences between the sexes in prenatal diagnosis - the prenatally diagnosed sex of the foetus (using ultrasound scanning) can be a target for abortion in some countries.
     Female children in some cultures are not as valued as males, since the family lineage is thought to be carried along the males, therefore selective abortion of female foetuses can take place if there is a limit on how many children a couple can have (e.g. India use sex selection and abortion to keep their population size down).
     In the USA there is no law against sex selection, therefore the Western cultures can also choose abortion if they do not want their child to be a certain sex.

     The HGP could also release information that will cause another inequality between the sexes, and not necessarily on behalf of the women.
     If, for example, it was found that one sex was genetically proven to be more intelligent than the other (rather than basing this on the expected qualities of a "typical" male or female), this may alter the current view of the sexes. If females were found to be more intelligent than males, then employers may hypothetically discriminate against men in the workforce instead of women in light of this discovery.

      It is up to the ELSI program to ensure that socially-sensitive information such as this hypothetical gender imbalance is kept secure and is not abused.

 

Ethnicity:

     It has been proven that humans are 99.9% identical in their DNA and any two individuals will have only 1 in 1000 base pairs difference. Despite this evidence, it only shows us that we are all part of the same species and it does not indicate that we are uniform in similarities among us - there are in fact many genetic variations between different population groups and even between individuals in the human race.

     For this reason, when the HGP was initiated, there was also a study that was proposed to run alongside it called the Human Genome Diversity Project (HGDP). This project is still ongoing and involves analysing the human genome for variations among different populations around the world. The issue of ethnicity and race is not so much concerned with the HGP as with the HGDP but both are interrelated projects.
     The HGDP is thought to be useful for numerous reasons, such as tracing lineages in history (for example, whether the British are more closely related to the Scandinavians or to the French), determining differences in drug responses in pharmacogenomics and what groups are more genetically susceptible to certain phenotypes.

     Initially, it was believed that it would be a successful project - in that it would contribute towards a drug revolution (drugs could hopefully be tailored for each population as a result).
     However, there were some racial groups against the HGDP that opposed it for unpredictive reasons. Certain Native American groups believed that the HGDP was a force that would "steal" their genes and destroy their culture, maybe even result in genocide. This view was due to the fact that their creation stories were an enormous part of their religion (like the bible tales for Christians) and therefore if it was proved that they migrated across the Bering Strait, it would shatter their religion and result in the loss of something deeply ingrained in their culture.

     Other groups were concerned that the HGDP would use the genetic information of third-world countries for drug development and then sell those drugs back to the third-world people at an expensive price they cannot afford.

     Another commercial issue that arose was who had the patent right of a gene or allele that was designated to an ethnic group. It would be thought outrageous by the people of that race if someone from another race who "discovered" it claimed it to be their own.

     Despite these setbacks, advantages of the HGDP in the medical field may outweigh the issues and some believe that the HGDP may even reduce racism by showing that all races are different in equal values, therefore there is no "perfect" race that could have a genetic authority over others (such as the Nazis over Jews) .
     This re-emergence of new "eugenics" (the act of eradicating other races/those with a certain phenotype in order to gain a racially "perfect" population) is one of the biggest fears of the post-genomic era after witnessing the horror of WW2.

     As with gender issues, the ELSI program will need to focus on all aspects of possible abuse of this information and ensure that racism is kept to a minimum.

 

Go to the Links & References page for further reading on this area.