BIOLOGY
100K Genomes Project
What information is available?
What further information is required?
100K Genomes Project is run by the department of Health in a branch called Genomics England.
Next generation sequencing was used to sequence the entire genomes in hours.
The genomes of 100,000 people were sequenced. The people chosen were cancer sufferers or sufferers of rare diseases or members of their family.
The data collected will be examined carefully and looked at in conjunction with the medical records of the person whose genome has been sequenced. It is hoped that this analysis will allow better diagnosis of disease, treat diseases more efficiently and ideally pinpoint the causes of many diseases.
Consider the feelings or emotions involved.
How would you feel knowing that you have certain alleles that predispose you to certain problems e.g. heart disease or Alzheimer’s disease?
How would you feel knowing that you have a genetic disorder which will manifest in later life and currently has no cure e.g. Huntington’s disorder?
How would you feel about your doctors, insurance company, mortgage company having this information about you?
What if an inherited disorder were identified? Should you tell your close family e.g. siblings or even your children?
Considers the positives or advantages.
DNA screening can give you very accurate information on your ancestry.
Sequencing your genome could lead to individualised medicine and lifestyle advice due to the identification of mutant alleles that can be correlated with known health problems. That is far more efficient than the 'one size fits all' current medical care.
Potential parents with family history of genetic problems can initially check their own DNA for the mutation and if found could then use preimplantation genetic diagnosis to screen embryos for the genetic disorder, implanting only the healthy embryos.
Parents can screen children's DNA so lifestyle or medical intervention can start as early as possible.
Parents can screen embryos and choose only the embryos with the best characteristics for their children.
Considers the negatives or disadvantages.
What if a person’s ancestry leads to discrimination against them?
If a patient has information about their genetic profile that brings up issues should their family be told? What if they don’t want to know?
Creating embryos for screening can raise ethical issues. What happens to the embryos identified as being genetically undesirable? Do you consider embryos to be potential human life or just bundles of cells?
Who owns genetic information? If a child or embryo is screened who owns the information, the parent or the child?
How can we be sure our genetic information won’t be given to companies which can use it to determine whether or not to give insurance or mortgages.
Even if our genetic information is deemed to be kept secure what is there to stop the theft of data by computer hacking?
Creative thinking, considers alternatives.
What alternative is there to genetic screening to discover someone’s heritage?
How could genetic counselling be used when giving patients genetic information?
What alternatives are there to the genetic screening of embryos? Adoption maybe?
Patients with family history of disease should be told how to live a healthy lifestyle despite not knowing for certain if they have genetic abnormalities?
Any alternatives to storage of vulnerable data?
Controls the process and summarises the findings.
Harrison is of the opinion that the data collected in to 100K Genomes Project should remain anonymous during the research and then immediately destroyed. He says it is fine for research but personalised data should never be shared or stored.
Georgia thinks that the information gathered belongs to the people whose genomes were sequenced and should be given to their doctors so it can be used, especially if decisions need to be made about the effects on any children the person may have.
DISCUSS