This House would allow parents to genetically screen foetuses for heritable diseases

Today, with the many advances in technology it has become possible to detect defeats and disabilities before birth. Particularly controversial is the issue of genetic screening of fetuses to determine their predisposition towards certain congenital disorders, and even more concerning, whether we should intervene to prevent them. Methods of genetics screening are used when considering In Vitro fertilization (IVF), as well as for naturally conceived fetuses.

Using In Vitro fertilization (IVF) techniques, an embryo can be made by the fertilization of an egg with a sperm outside of the female’s body. The resulting embryonic cells can be tested by removing one and screening the DNA complement to ascertain the presence of specific genes. This procedure is already being employed in labs. It can help to identify potentially debilitating illnesses or inherited disorders, and also for determining the sex of a baby to allow parents carrying a sex-linked disorder gene to procreate without passing on a genetic disorder to their children.

In theory nearly any couple can request genetic screening, but it is highly recommended if one or both partners have genetic abnormalities, there is a family history of genetic abnormalities or when one of the partners is from a high risk ethnic group. Genetic testing involves family history assessment and undergoing genetic tests (1). In the UK, up until March 2011 testing has been granted mainly to couples who already had genetic diseases in their families such as sickle cell anemia or cystic fibrosis. This testing is in the UK, under the endorsement of the national pre-pregnancy screening program is now available to all couples, even before they conceive a child and without any family history of diseases(2).

Meanwhile in the US commercial companies such as Counsly in 2010 had already launched a product that detects carriers of some genetic disorders (mainly single gene disorders). After the detection of such a disease carrier, parents can decide to get IVF fertilization and exclude the defected gene so they have a child without inheritable diseases (3).  

Controversy has been sparked in a case in the USA in 2000, when a baby boy, Adam Nash, was born after having been selected (genetically screened) as an embryo, from several embryos created by IVF by his parents, on the grounds that he was genetically healthy and able to act as a bone marrow donor for his sister, who had a genetic disease.

This debate is about whether parents should be allowed to genetically screen for healthier offspring therefore preventing inheritable diseases.

1.      Merck Manual, http://www.merckmanuals.com/home/sec22/ch256/ch256b.html, accessed 05/21/2011

2.      James Meikle, Pre-pregnancy genetic screening backed by government advisers, 04/06/2011, http://www.guardian.co.uk/society/2011/apr/06/pre-pregnancy-genetic-screening-government, accessed 05/21/2011

3.      Andrew Pollack, Firm Brings Gene Test to Masses, 01/28/2010, http://www.nytimes.com/2010/01/29/business/29gene.html, accessed 05/21/2011

Title 
Genetic testing ensures the best quality of life for children vulnerable to heritable diseases
Point 

We have a duty to the child to give it the best possible start in life, and if the technology is available to determine whether a baby is brought into the world with or without a genetic neurological disease such as Huntington’s, cystic fibrosis or sickle cell anemia, we should exercise that right.

A child that has Cystic Fibrosis (CF) produces too much fluid and mucus in the lungs, pancreas and passage ways, which then become thick, sticky and hard to move. This means that germs get stuck in the mucus and the child suffers from a lot of infectious diseases. Thus lead to reduced life expectancies (1).

For the gene detectable blood disease Thalassemia in its moderate and severe forms children may need very frequent blood transfusions, which over time lead to damage of heart, liver or other organs. Or may need stem cell transplants (bone marrow transplants) in order to get these transplants children will usually need to undergo radiation and need to have the luck of a well matched donor (2). 

Congenital malformations, deformations, chromosomal abnormalities are the leading causes of 20% of infant deaths in the US. More than 6,000 single-gene disorders - which occur in about 1 out of every 200 births - such as cystic fibrosis, hemochromatosis or sickle cell anemia.

Dr. Gregor Wolbring (University of Alberta in Canada) sees embryo selection as "a tool for fixing disabilities, impairments, diseases and defects"(3).

If we have ways to prevent children from such suffering and can manipulate only with those genes so that they do not have to suffer, we should do so.

1.      KidsHealth, http://kidshealth.org/parent/medical/lungs/cf.html#, accessed 05/21/2011

2.      Mayo Clinic, http://www.mayoclinic.com/health/thalassemia/DS00905, 05/21/2011

3.      MedicineNet.com http://www.medterms.com/script/main/art.asp?articlekey=2820, accessed 05/23/2011 

Counterpoint 

The genetic test does not prevent or cure anything. It merely asserts whether someone is a carrier of a genetic disorder. The testing would be paid for by couples to see if they are both carriers of this disorder. The decision then a couple can make based on the screenings is then to:

      a) not have children together

The idea of these tests preventing people from marrying is mental. In our liberal society surely it is love that counts in a relationship, not how well your genes fit together to make the perfect child.

      b) choose in vitro fertilization

In order to make them prevent the disease, so that the defected genes (in some cases) can be manipulated.

       c) abort the present fetus

We pressurize and take away choices of the parents, by giving them the knowledge, regarding their children. 

A professor of Law at Harvard University, Paul Freund also takes up the position that an unborn child has the right to random genes.  Freund states, 'The mystery of individual’s personality, resting on the chance combination of ancestral traits, is the basis of our sense of mutual compassion and at the same time, of accountability."

Professor Freund suggests that the ethical approach to advances in genetic technology allows the random assortment of genes to take effect, thereby protecting the sanctity of the human individual (1).

Further on with the advances in medicine genetic conditions and disorders no longer present such a burden on the children and enable them to live a good lifestyle and have high survival rates. 

1. Renee C. Esfandiary, The Changing World of Genetics and Abortion: Why the Women's Movement Should Advocate for Limitations on the Right to Choose in the Area of Genetic Technology William and Mary Journal of Women and the Law, published 1998, http://scholarship.law.wm.edu/cgi/viewcontent.cgi?article=1265&context=wmjowl, accessed 05/23/2011 

Title 
Parents have a right to acquire and act upon medical information
Point 

This argument comes from the idea, that a body is the property of its owner, as well as a fertilized egg is the property of the couple that created it whom also have parental rights

a) Self-determination

Some proponents of genetic screening might go as far to create the distinction between an embryo and a child: considering an embryo not to be a living being, but rather just a mass of cells, makes it possible to avoid entirely considering the "screening" process as a selection process between living human beings. Rather, it could be interpreted merely as a selection between different organizations of cells that have differing potential to become healthy "life".

b) Parental rights

Currently we allow couples to choose not to have children due to their own genetic deformations. We allow them to tie their tubes, get sterilized due to their own decision not to have children with genetic defects or children at all. 

Experts suggest, that due to the sanctity of parental rights, the principle decision making should be in the hands of the parents, also regarding the power over the future of their DNA.  With this, the society respects the principal decision making right of the individual to control their family and the destiny of their offspring (1).

Mainly making it a next step in deciding what their course of action regarding children will be.

1 Renee C. Esfandiary, The Changing World of Genetics and Abortion: Why the Women's Movement Should Advocate for Limitations on the Right to Choose in the Area of Genetic Technology William and Mary Journal of Women and the Law, published 1998, http://scholarship.law.wm.edu/cgi/viewcontent.cgi?article=1265&context=wmjowl, accessed 05/23/2011

Counterpoint 

Modern society discriminates itself against the principles of individuals choosing self-determination and parental rights when it comes to the opposite case. There are high double standards when for example a couple chooses that their child should be deaf, just as they are.

This was the case with Tomato Lichy and his partner Paula, who wanted IVF in order to produce a child that was deaf- just as they are. The “embryo bill in 2008 (UK)” passed with a clause that exactly prohibits such actions as the deaf couple in limits of their right to self-determination and parenting requested.

Clause 14/4/9 states that, "Persons or embryos that are known to have a gene, chromosome or mitochondrion abnormality involving a significant risk that a person with the abnormality will have or develop a serious physical or mental disability, a serious illness or any other serious medical condition must not be preferred to those that are not known to have such an abnormality." (1)

Specifically this means that in cases of embryos the law makes parents choose the healthy embryo over the embryo of their decision. It is unjust to appeal towards the rights of self-determination and parental rights if they are not applicable to all parents and if the distinction is made based on arbitrary definitions of valuable physical characteristics.        

1  Dominic Lawson, Of course a deaf couple wants a deaf child, 03/11/2008, http://www.independent.co.uk/opinion/commentators/dominic-lawson/dominic-lawson-of-course-a-deaf-couple-want-a-deaf-child-794001.html, accessed 05/23/2011  

Title 
Liberal societies have a duty to minimise avoidable suffering that might affect their members
Point 

Some of the genetic diseases tested include great suffering for the individual, one of them is the Tay Sachs syndrome. Where nerve cells become fatty from reoccurring infections.(1) This is a disease, where even with the best of care; a child dies at the age of 4.

Another is also Down Syndrome, where half of the sufferers have heart defects, increased risks of types of leukemia and high risks of dementia. Physical and mental limitations are also a feature of such a defect which causes many children to die early. (2).

So it is the duty of any society to prevent such sufferings for both child and parents at any cost or method. A similar view is shared among the Jewish community, who has problems with a high prevalence of Tay Sachs syndrome. They believe that due to the psychological and physical repercussions of the birth of a child with the genetic disorder it is better to screen and choose a healthy embryo (or abort the present pregnancy). (3)

So because such diseases cause great distress for the involved parties and we could prevent it, it is morally right for society to engage in genetic screening.   

 

1. National institute for Neurological Disorders and Stroke, http://www.ninds.nih.gov/disorders/taysachs/taysachs.htm, accessed 05/24/2011

2.Medline Plus 10/18/2010, http://www.nlm.nih.gov/medlineplus/ency/article/000997.htm, accessed 05/24/2011   

3. Daniel Eisenberg, A Jewish perspective on issues related to screening Tay-Sachs disease, http://www.aish.com/ci/s/48909807.html., accessed 05/24/2011

Counterpoint 

Seen from a philosophical point is that if a child is not brought into the world, it has not benefited of the community and in that sense you can never harm a person by bring it into existence, unless the person's life is so dreadful that nonexistence is preferable.

That life with a disability or chronic illness is predictably worse than non-existence is not plausible for most of the defects for which we test, even Down syndrome, which is the most tested for and common reason for abortion, Where in fact a happy disposition is actually a characteristic trait. Hence, bringing a child into existence cannot count as harming it. (1)

 

1. Stanford Encyclopedia of philosophy, http://plato.stanford.edu/entries/ethics-pregnancy, accessed 05/24/2011

Title 
Genetic screening may lead the marginalisation of those living with genetic disorders
Point 

Seen from a philosophical point is that if a child is not brought into the world, it has not benefited of the community and in that sense you can never harm a person by bring it into existence, unless the person's life is so dreadful that nonexistence is preferable.

That life with a disability or chronic illness is predictably worse than non-existence is not plausible for most of the defects for which we test, even Down syndrome, which is the most tested for and common reason for abortion, Where in fact a happy disposition is actually a characteristic trait. Hence, bringing a child into existence cannot count as harming it. (1)

 

1. Stanford Encyclopedia of philosophy, http://plato.stanford.edu/entries/ethics-pregnancy, accessed 05/24/2011

Counterpoint 

Genetic screening allows for parents to give their children the possibility of living a life without a debilitating genetic condition.  Surely those who live with these conditions would not want to have other endure their pain, when there is an option not to.

By having these genes that cause such pain, and short life expectancy eventually removed from the gene pool we are also increasing the strength of the human race.

Genetic screening is only to be used to prevent and let families know about genetic defects. It is not discrimination to want humans to not bear genetic defects that debilitate their life, or end it premature through pain and suffering. 

Title 
A screening culture may lead to the value of human life becoming distorted
Point 

Genetic engineering treats embryos like commodities: “if the product isn’t sufficiently equipped, doesn’t produce the desired results – we will not launch it”. Even if we weren't considering embryos to be "human life", it is inappropriate to treat them as commodities with an "option to purchase". This cheapens at least the potential life-forms these embryos can become.

Views of doctors and also future parents regarding the value of their unborn children’s lives are changing.

In a survey taken in New England (USA), there was a substantial majority in favor of genetic screening for a wide range of disorders. About 11 per cent of the couples have also admitted to wanting to abort a child that was genetically predisposed to obesity. A condition with which it is possible to live a good lifestyle (1).

With allowing more and more genetic screening and abortions / manipulations based on genes we are making life more of a commodity.

 

1.Jim Leffel, Genetic Technology, Engeneering Life: Human Rights in a Postmodern Age,  http://www.equip.org/articles/genetic-technology, accessed 05/23/2011  

Counterpoint 

In 2006 already Baroness Ruth Deech, the former chairwoman of the Human Fertilisation and Embryology Authority in the UK explained, that it is far more ethical to choose an embryo before implantation, than getting pregnant, deciding there’s something wrong with the baby and then aborting it.

Mainly it is the duty to impose the right restrictions that would enable a distinction on what is necessary for a normal lifestyle and where to draw the line for genetic predispositions (so for example to not abort or not implant babies with genes for obesity).

Also it is in the human nature to abort fetuses from the uterus if they are not healthy, it is a  help to the natural process. Because during every cycle of a sexually active female fertilized eggs if not found to be healthy enough to survive get aborted naturally (1).

1. Head to head: Genetic screening, 05/10/2006, http://news.bbc.co.uk/2/hi/health/4757193.stm, accessed 05/23/2011

Title 
Genetic screening may lead to the pooling and centralised storage of genetic information
Point 

Most diseases people will not have heard of. Such tests can be used also to store DNA in a database. The hotly debated idea of a DNA database has received much criticism. By framing the question of the ethics of a DNA database in this light is much more positively received by the public, and this is a way governments and insurance companies will change the public perception of a DNA database.

Health insurance companies in America and life insurance companies in Britain will be very keen in the use of this data in order to give higher premiums to those who show positive for certain diseases.

Such genetic screening then may lead to companies demanding information about clients before ensuring them.

This fear of insurance in the US being denied due to genetic predispositions is not groundless. A study conducted by Georgetown University Health Policy Institute in 2008 proves a similar point. In 7 of 92 underwriting decisions, insurance providers (hypothetical cases) decided, they would deny coverage, charge more or exclude certain conditions from coverage based on genetic test results (1).

 

1.   Amy Harmon, Insurance Fears Lead Many to Shun DNA Tests, 02/24/2008, http://www.nytimes.com/2008/02/24/health/24dna.html?pagewanted=1, accessed 22/05/2011     

Counterpoint 

Most genetic screening tests can also be performed at home, with results sent only to the user and so kept secretly – away from insurance companies and health institutions. It is then the domain of the individual itself if he or she wants to disclose this information. Discrimination based on the genetic pool currently seems to be rare but since thousands of Americans are accustomed to a health insurance system in which known risks carry financial penalties, they do not disclose this information (1).   

Regarding genetic screening in the UK, there is a voluntary ban among members of the Association of British Insurers from being able to access the results of genetic tests (apart from Huntington’s disease). This ban will be again reviewed in the year 2014 (2).  

 

1. Amy Harmon, Insurance Fears Lead Many to Shun DNA Tests, 02/24/2008, http://www.nytimes.com/2008/02/24/health/24dna.html?pagewanted=1, accessed 22/05/2011     

2. Impact, http://www.impact-study.co.uk/public/geneticsandcancer/genetictesting/positiveandnegativeaspects, accessed 22/05/2011  

Title 
Genetic destabilisation
Point 

Natural selection is the process whereby people mate, have children and those children enrich the gene pool – if they survive. Occasionally genetic mistakes are made in that reproduction. As long as the result is not fatal, that mistake can begin to infiltrate the gene pool. More people may come to have this mistake in built into their genome. Whilst we may see it as a mistake in our current living conditions, that mutant gene may be a defense to future conditions.

For instance, the spread of sickle cell anemia in Africa. This disease causes red blood cells to carry less oxygen due to the squashed nature of all the red blood cells. This condition causes people to die younger, in 1973 life expectancy for a sufferer was 17, and it is now 50 and above. However, sickle cell anemia is a natural immunity against malaria. The life expectancy for someone with malaria is far lower.[[Sickle cell disease, QualityHealth, 13th January 2011, http://www.qualityhealth.com/health-encyclopedia/in-depth-reports/sickle-cell-disease accessed 25/05/11]]

We need different genes in the human gene pool even if we do not see the benefit of them now.

Counterpoint 

Side proposition are not suggesting that natural selection would not still occur, but that seriously debilitating genetic diseases would no longer lead to the death of many infants, or the poor quality of life. In 1973, we did not have the technology to prevent malaria which we have now. With the technology we have today we can manage and treat many more illnesses than previously thought possible. 

Bibliography 

1.      James Meikle, Pre-pregnancy genetic screening backed by government advisers, 04/06/2011, http://www.guardian.co.uk/society/2011/apr/06/pre-pregnancy-genetic-screening-government, accessed 05/21/2011

2.      Andrew Pollack, Firm Brings Gene Test to Masses, 01/28/2010, http://www.nytimes.com/2010/01/29/business/29gene.html, accessed 05/21/2011

3.      Amy Harmon, Insurance Fears Lead Many to Shun DNA Tests, 02/24/2008, http://www.nytimes.com/2008/02/24/health/24dna.html?pagewanted=1, accessed 22/05/2011

4.      Renee C. Esfandiary, The Changing World of Genetics and Abortion: Why the Women's Movement Should Advocate for Limitations on the Right to Choose in the Area of Genetic Technology William and Mary Journal of Women and the Law, published 1998, http://scholarship.law.wm.edu/cgi/viewcontent.cgi?article=1265&context=wmjowl, accessed 05/23/2011      

5.      Jim Leffel, Genetic Technology, Engeneering Life: Human Rights in a Postmodern Age,  http://www.equip.org/articles/genetic-technology, accessed 05/23/2011 

6.      National institute for Neurological Disorders and Stroke, http://www.ninds.nih.gov/disorders/taysachs/taysachs.htm, accessed 05/24/2011

7.      Kukla, Rebecca and Wayne, Katherine, "Pregnancy, Birth, and Medicine", The Stanford Encyclopedia of Philosophy (Spring 2011 Edition), Edward N. Zalta (ed.), http://plato.stanford.edu/archives/spr2011/entries/ethics-pregnancy/., accessed 05/24/2011

 

Multiple authors / organizations

1.      Merck Manual, http://www.merckmanuals.com/home/sec22/ch256/ch256b.html, accessed 05/21/2011

2.      KidsHealth, http://kidshealth.org/parent/medical/lungs/cf.html#, accessed 05/21/2011

3.      Mayo Clinic, http://www.mayoclinic.com/health/thalassemia/DS00905, 05/21/2011

4.      Impact, http://www.impact-study.co.uk/public/geneticsandcancer/genetictesting/positiveandnegativeaspects, accessed 22/05/2011 

5.      MedicineNet.com http://www.medterms.com/script/main/art.asp?articlekey=2820, accessed 05/23/2011

6.      Head to head: Genetic screening, 05/10/2006, http://news.bbc.co.uk/2/hi/health/4757193.stm, accessed 05/23/2011

7.      Medline Plus 10/18/2010, http://www.nlm.nih.gov/medlineplus/ency/article/000997.htm, accessed 05/24/2011

Sickle cell disease, QualityHealth, 13/1/11, http://www.qualityhealth.com/health-encyclopedia/in-depth-reports/sickle-cell-disease   accessed 25/05/11

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