Ethical Issues Relating to Genetics Flashcards
Mark’s father is suffering from Huntington’s disease. Mark has decided that, in spite of the fact that he knows that he has a 50% chance of carrying the gene which causes the disease, he does not want to have a test to find out if he carries the Huntington gene. He prefers to live with the uncertainty and is also a little bit concerned that a positive result might affect his life insurance negatively. His girlfriend Katie, however, feels that she would like to know whether or not Mark is a carrier. Mark feels pressurised by Katie and is inclined to comply with her wishes. He fears that not taking the test would result in Katie ending her relationship with him.
What are the ethical issues associated with genetic testing for late-onset diseases?
Socio-economic circumstances
Theres nothing that can be done for a positive result - could potentially do more harm than good
Is it true consent if he is being pressurised
If Mark had still been a child, should his parents be allowed to test Mark to find out if he carries the gene for Huntington’s disease?
Autonomy - it should be his choice
Nothing can be done about a positive result
Take away life - waiting for symptoms
Putting a label on it
Knowing could have a psychosomatic effect
Would it be acceptable for Mark’s parents to send off a sample of Mark’s saliva to a company like ‘23 and me’, which analyses genetic ‘variations that are known to be associated with important health conditions, ancestry and traits’?
No
No consent
Can you trust the company?
What happens to the data?
Is the test accurate?
Is the analysis of DNA allowed?
The non-consensual analysis of DNA is prohibited under section 45 of the Human Tissue Act 2004
2 exceptions:
- Persons who lack capacity to consent & transplants
- In the prevention & detection of a crime
What is eugenics?
Modern eugenics, better known as human genetic engineering, changes or removes genes to prevent disease, cure disease or improve your body in some significant way
Mark and Katie are now married, even though Mark has had a positive test result for Huntington’s. They are now thinking of having a baby. Mark and Katie consult with their GP to talk through their fear of having a child with the Huntington’s gene. The GP acknowledges their concerns and talks about recent breakthroughs in medicine that could help them. Mark and Katie could choose to have IVF, followed by a technique called pre-implantation genetic diagnosis (PGD). In this way, they could select an embryo free from the Huntington’s gene and implant this embryo in the womb.
Should Mark and Katie use PGD to make sure that they will have a child without the genetic predisposition for Huntington’s disease?
Its legal
Need to understand the risks
Is a child with the Huntington’s gene of less value than a child without the Huntington’s gene
Another possibility is creating a clone of Katie, yet ‘reproductive cloning’ is currently forbidden in the UK
Do you think reproductive cloning should be legalised so that Mark and Katie could produce a clone of Katie?
Is it natural
Narcissistic
Against making back up humans
Katie is now pregnant (following natural conception). Since she is 36 years old, she has a higher risk of having a child with Down’s Syndrome than had she been younger. Mark and Katie discuss this issue with their GP, who informs them about the possibility of having an amniocentesis to determine if the fetus is affected by Down’s Syndrome, or by Huntington’s chorea.
Should Katie be given the opportunity to have an amniocentesis?
What would they do if they found out the fetus had Down’s Syndrome or Huntington’s?
Mark doesn’t want to know if he has the Huntington’s gene - a positive result for the fetus would indicate that he has the gene
Risk of spontaneous abortion
Jason was born four years ago. He has now been diagnosed with leukaemia and is not expected to live for more than 5 years without treatment. Treatment requires bone marrow transplantation and no suitable donor has yet been found. Katie and Mark now consider having another child in the hope that it could donate either bone marrow or stem cells derived from its cord blood and placenta to help Jason. Leaving things to chance would mean that there would only be a one in four chance that the new child would be a suitable donor. Alternatively, they could use PGD in the hope to be able to select an embryo that would be a human leukocyte antigen (HLA) match with Jason.
Should Mark and Katie be allowed to use PGD to create a ‘perfect match’ child?
The HFEA allows tissue typing to create a ‘saviour sibling’ for some conditions, provided that it is combined with PGD. It appears to be uncomfortable about allowing tissue typing on embryos who are not being tested for a genetic disease at the same time. This may explain why, currently (October 2020), leukaemia is not on the list of conditions for which it is allowed.
Did the ‘saviour sibling’ consent to this?
Would they be valued the same?
Were they wanting more children anyway?
Imagine that Mark had never known that his father suffered from Huntington’s chorea, but that Jason (now 18 years old) knew, and wanted to know whether he might carry the gene as well.
Do you think Jason and/or the geneticist might have a moral problem if Jason’s test result came back positive?
Confidentiality
Goes against Marks wishes
However, Jason is 18 so can make his own informed choice
Whether he choses to tell his father or not is his own choice
One obstacle to the advance of stem cell research is the shortage of human eggs. Researchers are now able to use bovine eggs which are denucleated and activated with new nuclei obtained from human somatic cells (somatic cell nuclear transfer).
Do you agree with the creation of such chimaeric embryos for research purposes?
The creation of ‘human admixed embryos’ (more commonly known as ‘hybrid embryos’) is allowed in Great Britain by the Human Fertilisation and Embryology Act 2008
No better alternative
No human embryos involved
Emily suffers from a serious mitochondrial disease and is at risk of having a baby with mitochondrial abnormalities caused by her mitochondrial DNA. There is a significant risk that her baby would, at some stage, be afflicted with the disease that Emily suffers from. Emily would like to explore whether she could use the cytoplasm of an egg cell donated by another woman so that her child would be free from the disease. The cytoplasm could then be used to replace her own cytoplasm and the egg cell could be fertilised by her husband through IVF.
Do you agree with this procedure?
Should the NHS fund this procedure?
Who has parental responsibility for the child – need contract agreements
Why not adopt?
There are alternatives available
Is it a good use of NHS money if its not their only option?
Is it everyones right to have their own children?
The Human Fertilisation and Embryology (Mitochondrial Donation) Regulations 2015 allow clinics to help Emily in this way, subject to a licence from the HFEA
Thierry Henry was the best football player the Premiership has ever seen. Thierry is concerned about the continued success of Arsenal FC. The year is 2040. He is now discussing with his girlfriend how they might contribute maximally to the future of the club. Experiments with mice have demonstrated that the insertion of a synthetic gene within the early embryo results in the expression of that gene in all cells of the developing embryo, and that it can improve the speed of movement in mice considerably. Thierry and his girlfriend contact the research team to ask if they might be able to help them to enhance the speed of their offspring by means of the use of a similar technique.
Should the researcher be allowed to offer his/her services to Thierry’s girlfriend?
What if there was a possibility to enhance intelligence, rather than speed?
Would your answer be different if the gene was not a synthetic gene, but a gene taken from a cell of the fastest human runner on the planet?
No
What is the unnaturalness objection?
Some people claim that genetic engineering is unnatural, and that it would be unethical because of this.
This raises two questions:
- What is meant by ‘unnatural’?
- What is the connection between what is unnatural and what is unethical?
