Jason Thompson

Embryo biopsy as an elective procedure

I. When beginning to read the case that I selected about embryo biopsy being a possible

procedure for patients, I instantly got the sense of being in an ethical situation when the first sentence states, It was only a few months after an IVF procedure was approved at Midwest Medical Center that a proposal was presented to the Ethics Committee for discussion. This to me is a red flag in our case for a couple reasons; with an important procedure such as IVF and the procedures that relate to it, takes a particular set of specialists that are practiced in this area, but with them only being able to do IVF procedures for a couple months leaves me with thoughts of misdiagnosis, or potential error in the actual procedure. Of course one cant assume these errors but in the article Dr. Thomas Sobeira clearly states his deep concern about how accurate the test would be, and the potential for misdiagnosis, so it will be absolutely vital to find out more about the safety of this procedure before any outcome is resolved. After reading the steps of how the procedure will actually remove the cystic fibrosis or Huntington gene defects from the embryo, I find myself at the most substantial ethical dilemma in the case, what moral status does an embryo have? The procedure has few steps the article shares with us, the sample used to infer genetic composition includes polar bodies removed on day one after fertilization and one or two blastomeres on day three of cleavage-stage embryo development. The embryos that do not have the defect would be implanted in the mothers womb, thus opening the door to decide which fetuses to continue developing, and which to discontinue. While PGD (Pre-implantation genetic diagnosis) offers a promising way for families affected for certain gene defects to ensure it wouldnt occur in any other family

members, we must remember the possibilities it will also bring such as the choices of only implanting the healthy babies, or the gender of your child, and even choosing specific features of your child, issues that bring some to wonder about the future of the technology. II. L. Wilton in his article on the causes of misdiagnosis states that, the true level of misdiagnosis in PGD (preimplantation genetic diagnosis) may remain a mystery for several reasons, such as health centers being reluctant to publish information, a proportion going undetected due to pregnancy or live birth not being guaranteed, and to the misdiagnosiss that have no adverse medical consequences. With every type of misdiagnosis taken into account in his PCR and FISH tests the rate is estimated to be less than 6%. According to Melissa Conrad Stoppler, MD, cystic fibrosis is an inherited disease that affects the secretory glands, including the mucus and sweat glands, affecting mostly sex organs, lungs, intestines, liver, pancreas, and sinuses. Its due to the mutation in the cystic fibrosis gene on chromosome seven, it encodes a protein called CFTR(cystic fibrosis transmembrane) that leads to disruption of chloride channels on the cells. Cystic fibrosis has no cure, but with treatments advancing, so is life expectancy, allowing people to live into the forties and fifties, but the median expectancy being 36.8 years. Treatments include nutritional and respiratory therapies, medicines, and exercise but all with the intention of only improving quality of life.(Stoppler Pg 1.)

Huntingtons disease is a far more serious and fatal disease as it is a progressive form of dementia characterized by the loss of mental abilities, progressive psychiatric difficulties, and jerking uncontrollable movement of the limbs, trunk, and face. (Kennard Pg 1.) Christine Kennard also states that the disease reveals itself between the ages of 30 and 45, allowing the gene to just keep on being passed through generations, making the juvenile cases far my prevalent as of recent. It occurs in 16% of all cases of Huntingtons and develops before the age of 20, progressing rapidly producing such sever muscle rigidity that the affected person may not be able to move at all. There is no cure for Huntingtons disease, with only medications to make some of the symptoms more tolerable and comfortable. Prognosis for this disease is progession without remission over 10-20 years and death usually by infection, pneumonia, heart failure, or choking.(Kennard)

Not any different compared to other forms of new technology, IVF and the PGD procedure is expensive and only financially available to only a certain demographic of people. One round of IVF costs around $9,000, a woman may need subsequent tries to undergo a viable pregnancy; PGD adds another $4,000 to $7,500 to each round of IVF. The cost of PGD may decline overtime as it becomes more available, the current cost disqualifies access for many women, eventually causing some to, speculate that genetic disabilities will one day become a stigma of the lower class.(RHTP)

III.

Adding onto my last bullet point leads us straight into our first ethical dilemma, the role that money will play in this technology. With both services not being covered on most affordable insurances, this procedure might not be available to those parents that want it, or need it, raising questions of social justice, and equity. If the ethics committee is going to approve embryo biopsy and the procedures that come with it, its important to find a stable way to either allow it to be available on insurance, and not just for people to buy. It is morally right to have infertility covered on any form of health insurance to single gene holders that in our case have CF or Huntington, that could prevent the disease from occurring in any other pregnancies. Principles of social justice and equity tell us that this procedure should be available for everyone to elect to have, and I agree. Compared to that situational problem of money, we have clinical issues at hand here, dealing with the moral status of an embryo. This procedure results in the terminating of fetuses and embryos, and as most people would contend, anything human (embryos and fetuses) have the same moral status as living people. This leaves them with the basic right to not be killed in the interest of someone other than themselves, or arbitrarily, making this situation morally wrong. But beneficence plays a large role in why I think the ethics committee should approve this as an elective procedure, because the prevention of harm that it saves parents and families, and the overall removal of the disease in the population. Beneficence states that one should practice good, prevent harm, and always seek the overall benefit, and by embryo biopsy and PGD removing potential pain in these peoples lives, makes it morally right.

IV. When thinking of possible resolutions its important think about the probable consequences and outcomes of your decision. If in fact the procedure was approved for practice, along with it would come how its going to get paid for on both sides of the spectrum. By covering the procedure completely for parents with specific inherited gene defects, such as CF and Huntingtons, who have elected to do so, and disallowing the procedure for normal gene babies, this situation would be morally resolved. We must not forget that this procedure is at the ethics committee to be an elective procedure, key word elective, this entire situation would be unethical if it was being forced, but autonomy is being practiced and everyone capable of thinking and deciding for themselves, is. An embryo isnt capable of decisions or understanding the situation at hand; therefore more harm can be prevented by allowing this procedure to be available to certain parents. V. In this situation multiple people need to be in the decision making process to ensure that the most ethical resolution to the case was agreed upon and set in stone. In a complex case such as this one the govt. needs to be on the same page with all medical centers, and patients to ensure a procedure like this isnt used in an unethical manner, such as changing appearance, sex, and other various traits, because those do more harm than good. By the parents electing to go about embryo biopsy for a possible prevention of a disease in their child, the medical professional must then abide by the rule of veracity and truthfully educate them on every aspect of the procedure, including prognosis of the child

with/without it, and of course the potential of misdiagnosis. The ethics committee must then be informed of the case and decide that the condition is a preventable gene defect, meet with the parents and clearly come to an agreement that the principle of beneficence would support, the removal of disease. Conclusion In a diverse and deeply ethical case such as the procedure of embryo biopsy, and dealing with human life its vital that the decisions made are the right ones, and by following the five step decision making model I believe one can make the right ethical decision in any situation. Steps 1, 2, 3 are absolutely essential in finding the right choice, not only in ethical dilemmas involving human life, but in just about anything that requires question. By sensing that something is wrong, assessing why, or what makes it wrong, and gathering the factual evidence to support your stances, a proper decision will always be made.

Works Cited Dayal, Molina B. "Preimplantation Genetic Diagnosis ." Preimplantation Genetic Diagnosis. FACOG, 29 Aug. 2011. Web. 17 Sept. 2013. Kennard, Christine. "Huntington's Disease." About.com Alzheimer's / Dementia. N.p., 5 Mar. 2006. Web. 17 Sept. 2013. Nelson, Lawrence. "THE TECHNOLOGICAL CITIZEN Ethical Issues With Prenatal and Preimplantation Genetic Diagnosis by Professor Lawrence Nelson." THE TECHNOLOGICAL CITIZEN RSS. N.p., 2006. Web. 17 Sept. 2013. "Reproductive Health Technologies Project - Fertility - Pre-implantation Genetic Diagnosis (PGD)." Reproductive Health Technologies Project - Fertility - Pre-implantation Genetic Diagnosis (PGD). N.p., n.d. Web. 17 Sept. 2013. Sherbahn, Richard. "PGD and IVF - Preimplantation Genetic Diagnosis & In Vitro Fertilization, Pros and Cons About PGD and PGS." Does PGD & PGS Help IVF, Pros and Cons of Genetic Testing with IVF. N.p., n.d. Web. 17 Sept. 2013. Stoppler, Melissa C. "Cystic Fibrosis Symptoms, Treatment, Life Expectancy, Genes, Testing MedicineNet." MedicineNet. N.p., n.d. Web. 17 Sept. 2013. Wilton, L., A. Thornhill, J. Traeger-Synodinos, and J.C. Harper. "The Causes of Misdiagnosis and Adverse Outcomes in PGD." Www.geneticamedica.com. N.p., 20 Jan. 2009. Web. 17 Sept. 2013.