Case Study - “Personal Genome Mapping”

Omar Benjelloun – Student ID: 40215107

This case study involves two twin sisters, with an identical genetic material. The first one,

Samantha Schilit, who is a researcher in human genetics, took advantage of relatively easy

access to genome mapping in today’s age, and satisfied her curiosity about her own DNA

sequence. The genetic analysis was completed regardless of the expressed discomfort from

the second sister, Arielle Schilit Nitenson, a worker at the US National Human Genome

Research Institute. Arielle was not very open to the idea, since the map of her genome would

be available in Samantha’s medical records, hence, accessible by anyone who could access

the records in question. Subsequently, Samantha’s genetic sequencing proved to be beneficial

for Arielle as well. She was able to use the analysis to her own benefit, which possibly

prevented some health risks she could have faced during a labour. In this case, the undergone

procedure of genome mapping raises some ethical concerns with regard to both individuals,

notably one’s autonomy and right to confidentiality and privacy. Based on the deontological

school of ethics, one’s autonomy is essential. Samantha was able to exert her right to

autonomy, by having the freedom of choice, whereas Arielle, did not have a say and could

not stand in the way of her sister’s ambitions, therefore, not having any autonomous power to

give consent, whether she wanted to accept the potential consequences of having some of her

personal medical information in the out, and no control over her own privacy and

confidentiality. This situation poses some serious ethical questions, whether Samantha

needed Arielle’s consent or not? And whether Arielle had any veto power over Samantha’s

decision?
On one hand, one can argue that Samantha had the full legal right to proceed with the

analysis. According to Laura Herscher, an instructor and writer in the ethics of genetic

counseling, the law states that no one needs permission from any family member to proceed

with a genome mapping. Nevertheless, due to the conflict of interest, ethical considerations

are important to establish due to the moral implications. From one aspect, Samantha was able

to exercise her autonomy right, where she had control over her decision. Being a researcher

in the human genetics field, we can think that she had the ability to make an informed consent

before she went through with the genetic mapping. She was able to decide on the procedure

based on her knowledge of all aspects prior to the analysis. The fact that she used her body in

the way she saw fit, to satisfy her wants, without any direct impact on anyone else, is a strong

argument in favor of the morality of her decision. Relatively to another aspect, from an

ethical standpoint, her decision could be questioned! According to the virtue ethics school of

thought, Samantha failed to take into consideration the relationship with her sibling,

rendering Arielle unable to have any kind of control and putting her in vulnerable position.

On the other hand, Arielle’s position could very much be justified. The fact that she didn’t

have any control or autonomy over information personally pertaining to her poses some

serious ethical concerns. Her sister’s medical records included her genetic information which

are stored in an electronic database. Arielle being in the human genetics field as well, knew

the implications and the risks of such analysis, when it came to securing that personal data.

The fact is, her sister’s genome mapping could potentially put her in some unwanted

scenarios, that in case of a leak or if that information ends up in the wrong hands, she could

face discrimination in regard to insurance. That being said, Arielle did not have the option to

employ her right to autonomy. She did not have the option to make a choice on something

that could indirectly impact her.

Requiring Samantha to obtain her sister’s consent might be and might not be morally

justified. On one hand, it could undermine her right to autonomy regarding her own decision

making, on the other hand, it could impair Arielle’s right to confidentiality and privacy.

Furthermore, when it comes to the possibility of Arielle having a veto power over

Samantha’s decision, once more, the autonomy of both sisters would be in question in either

case. Thus, based on the two-sided debate, a side cannot be taken. From a theoretical and

moral point of view, both individuals should have a right to autonomy, and to be able to

access and make informed consent in regard to their personal medical information. In this

particular case, we are faced with a moral dilemma involving two siblings, where their

autonomy is limited by external factors and a personal relationship. They are directly and

indirectly impacted by external entities and possibly, personal values. Perhaps, some changes

on how personal medical information should be treated are required, meaning that,

individuals should have more control over what happens with their medical records.
Bibliography:

• Emily Mullin, “Do Your Family Members Have a Right to Your Genetic

Code?” MIT Technology Review 22 November 2016.

• Samantha Schilit and Arielle Schilit Nitenson, “My Identical Twin Sequenced

Our Genome,” Journal of Genetic Counselling Online First Articles 2016.

• Randy Shore, “Personal Genomics: The Test for Everything,” Vancouver Sun

27 June 2014.

• Pamela Fayerman, “BC Gene Sequencing Laboratory Retracts Accreditation

Claim after News Story Exposes Bogus Info,” Vancouver Sun 25 August

2015.

• Carolyn Abraham, “Would You Make Your DNA and Health Data Public If It

May Help Cure Disease?” The Globe and Mail 7 December 2012.

• Elizabeth Murray, “Inside 23andMe Founder Anne Wojcicki’s $99 DNA

Revolution,” FastCompany 14 October 2013.

• Britt Wray and David Oppenheim, Genomics (National Film Board Canada

Ontario Studio, in development, 2017).

• Kerry Gold, “How Genetic Testing Can Be Used against You—and How Bill

S-201 Could Change That,” The Globe and Mail 3 April 2016; Yvonne

Bombard, Ronald Cohn, and Stephen Scherer, “Why We Need a Law to

Prevent Genetic Discrimination,” The Globe and Mail 19 September 2016.

• Anneke Lucassen and Angus Clark, “Should Families Own British Medical

Journal 335 (7 Jul 2007), 22–3.