Society for Reproductive Medicine Discussion

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Question Description
I’m stuck on a Nursing question and need an explanation.

Discussion 1:

American Society for Reproductive Medicine only explicitly recommends egg freezing for women that are facing infertility.1 Since the patient that froze the egg is no longer alive the patient is no longer facing infertility and the egg is no longer recommended.

The stakeholders with interest in the eggs that have been preserved are the facility that has the eggs that are being preserved, and the next of kin that would have power over the assets of the deceased. The facility that is storing the eggs has a stake being that the eggs cost money to keep frozen for long periods of time. The next of kin with ownership of the assets of the deceased is also a stakeholder since they would now have ownership of the given frozen eggs. If the next of kin having wanted the eggs to be destroyed stated this to the facility the facility should accept the request. The issue of the payment of the storage fees should then be placed on the party that took ownership of the eggs, this is the party that has been given the assets of the deceased. The fees that would accumulate given the storage is the only cost will amount to only around $900.1

Harwood K. On the ethics of social egg freezing and fertility preservation for nonmedical reasons. Medicolegal and Bioethics. 2015;5:59-67

https://doi.org/10.2147/MB.S66444

Discussion 2:

A mother and her husband lost their bid to their daughter’s frozen eggs after she died from cancer 1. The daughter decided to freeze her eggs after being diagnosed of the said disease, and stated in legal form to freeze the eggs for 10 years 1. However, she failed to fill up the paperwork that states specific instructions for the eggs and who can have access to them 1. Therefore, despite moral dispute, the judge denied their case due to lack of documentation 1.

Just like with the ethical and legal complications of returning genetic results in cancer patients 2, participants’ relatives will and may have a legitimate interest in having access to their families’ DNA results, and in this case, fertilized eggs. This is very important especially when dealing with patients who have terminal diseases. Even if the couple died of an accident, they should have at least agreed on giving consent to relatives during inclusion, because “there is no possibility of asking permission for disclosing data to relatives after a patient has passed away” 2.

The next of kin giving out permission to dispose the eggs undermines the couples’ autonomy. DNA is the ultimate identifier 3 and if someone gets a hold of the eggs illegally and use it for unethical purposes, the couple’s privacy is in jeopardy. As families, it is their obligation to prevent this from happening since genetic information is shared within relatives, and it is harmful for them as well.

HIM professionals should make sure that written consent on what to do with the eggs exists before allowing this to happen since they have to preserve and protect their patients’ privacy and confidentiality. To prevent this issue from occurring in the future, perhaps the healthcare professionals along with the HIM, should write a disclosure policy that proposes to inform, add and authorizes patients’ family members just in case of events such as mentioned above.

Now, if there was a legal and written consent, whether a specific relative or just the next of kin, then, they should be allowed to decide on the fate of the “abandoned” eggs. While there are options on how to dispose the eggs, this decision usually would fall on the couple or parents. In this case, the couple has been deceased (and unless otherwise predetermined in a contract or stated in a will), the next of kin should now be contacted to make the decisions. The same options that would have been available to the ‘parents’ should be provided for the next of kin (i.e. pay fees, donate for research, for adoption or to thaw). Their decision should then be respected regardless of the financial implications to the clinic. These decisions have many ethical challenges as fertilized eggs have potential for life and arguably can be considered ‘alive’ after fertilization.

1. Elgot J. Mother loses bid to use dead daughter’s frozen eggs to give birth to grandchild. The Guardian. https://www.theguardian.com/society/2015/jun/15/mother-loses-bid-to-use-dead-daughters-frozen-eggs-to-give-birth-to-grandchild. Published June 15, 2015. Accessed April 11, 2020.

2. Lolkema, MP, Gadellaa-van Hooijdonk CG, Bredenoord AL. Ethical, Legal, and Counseling Challenges Surrounding the Return of Genetic Results in Oncology. Journal of Clinical Oncology. 2013; 21(15): 1942-1949.

3. Terry SF. Chapter 18: Genetic information. In Laurinda Beebe Harman and Frances H. Cornelius. Ethical Challenges in the Management of Health Information, 3rd Edition (p.474). Burlington, MA: Jones & Bartlett Learning; 2017.

Discussion 3:

The next of kin gave permission to dispose of the eggs rather than be held accountable for the storage fees

For holding facilities, they no longer need to bear the storage costs of eggs. For Kin, this still has moral issues. How should they deal with these eggs? Although embryos are simply frozen substances when they are disposed of, they can grow into humans if implanted in the correct environment. Does this make it different from other biohazardous substances? Some people will say yes. 1 From an ethical point of view, according to people ’s views on when to start, frozen embryos may be considered to be humans that should be treated with dignity and respect, or their human status is not high, and there are no special ethical rights. It is pointed out in the text that HIPPA provides 12 kinds of public interest and benefit activities. One of them is Cadaveric organ, eye, or tissue donation. 2 In the United States, under the regulations governing organ donation, unless there is evidence that the deceased disagrees, the 2006 World Anatomy Gifts Act allows close relatives to agree to the removal of organs and tissues. In 2006, the judge ruled that as long as the donor did not specifically refuse to donate, the anatomical gift can be retrieved with the consent of the donor ’s parents. 3 So legally speaking, kin can get their fertilized eggs.

Society for Reproductive Medicine Discussion

Reference
1Johnson A. What Are the Implications of All This? Https://web.stanford.edu/class/siw198q/websites/re… Ways of Making Babies / implicat.htm. Accessed April 12, 2020.

2 Harman LB, Cornelius FH, eds. Ethical Health Informatics: Challenges and Opportunities. Burlington, MA: Jones & Bartlett Learning; 2017

3Gholipour B. Making Babies after Death: It’s Possible, but Is It Ethical? Scientific American. Https://www.scientificamerican.com/article/making-babies-after-death/. Published June 12, 2013. Accessed April 12, 2020.

Discussion 4:

A former couple froze one dozen in-vitro fertilized eggs for future childbearing. The couple subsequently died in a motor vehicle accident. It has been three years and no one has formally requested custody of the eggs. Storage fees have not been paid.
A research hospital wants to obtain the eggs for testing associated with a rare genetic disorder.
Genetic carriers screening is not available or integrated in conventional healthcare in most countries. Technological advances has led to a two-fold transition from scanning to multiple diseases at the same time and to the uniform sampling of carriers, regardless of ancestry. Dutch key stakeholders in the area of realistic and scientific take-on screening carried out seventeen semi-structured interviews. The approach to constellations was used to classify obstacles and needs into three levels: culture, structure and practice. There appears to be an important barrier to carrier screening due to lack of collective sense of urgency for genetic carrier screening and lacks hierarchical processes and uncertainty and conflict over accountability. Accordingly, stakeholders agree that transition players should be officially identified and prepare to expand existing programs strategically and to bring various stakeholders together. 1 The method of Population-based preconception genetic carrier screening programmes (PCS) of recessive features differs from other forms of genetic testing and screening by providing persons suspected to be carrier of genetic traits for extreme recessive disorders and by having a wide variety of samples, probably hundreds. The issue of justice, consequences and autonomy is posed many ethical issues. It would be suggested that much of these ethical issues need attention in preconceiving PCS and related systems. It is often suggested that an official goal and the possibility that legitimate public aims do not necessarily guide production of PCS are ethically problematic. 2 The psychological consequences arising from reduced prevalence, complex genetic etiology and possible inheritability carry additional weight and hence rare disorders have more than symptom burdens. Health care services incorporate psycho-social, morbidity and injury challenges arising from differences in access to cost-effective medications, clinical innovation, best practice and development of monitoring, physician expertise, and prompt diagnosis. The Orphan Drug and Rare Disorder Act directly addresses unusual disorder treatment methods, while the Genetic Information Non-disclosure Act (GINA) discusses economic risks of dealing in rare genetic disorders. Policy substance show that wider policy frameworks are important to promote work and strategies for vulnerability in health and their consequences for the population of rare diseases. For future policy development and nursing programs on rare diseases, the Health Disparity Research & Education Act is essential. 3

Bibliography:

Holtkamp KC, Vos EM, Rigter T, Lakeman P, Henneman L, Cornel MC. Stakeholder perspectives on the implementation of genetic carrier screening in a changing landscape. BMC Health Serv Res. 2017;17(1):146. doi:10.1186/s12913-017-2083-9
Kihlbom U. Ethical issues in preconception genetic carrier screening. Ups J Med Sci. 2016;121:295–98. doi: 1080/03009734.2016.1189470 (Links to an external site.)
Holtzclaw WP. Policy framework for rare disease health disparities. Policy Polit Nurs Pract. (Links to an external site.) 2011 May;12(2):114-8. doi: 10.1177/15271544114042

Society for Reproductive Medicine Discussion

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