Do You Own Your Own Genetic Information?

Adenine, Thymine, Guanine, and Cytosine. Your entire genetic information is stored as these four

nitrogenous bases. Arranged in triplet codons in our DNA, it codes for the structures and functions of all

the cells in our body. The order of these bases makes different genes in the DNA. Since more than 99% of

the genes of any individuals of our species are the same.1 The presence and the expression of the rest 1%

are what makes each person genetically unique. In this essay I will discuss whether individuals own their

genetic information.

In a study done by James W. Hazel and Christopher Slobogin, it was found that only 44% (24 of 55) of

the policies of the companies investigated addressed the ability for the customer to delete their genetic

data. Although only 5 of the 24 companies explicitly stated that the customer is able to delete all of the

data.2 The fact that only 9% of the companies investigated in the study (5 of 55) declared that a customer

can fully delete their data from the database rejects the idea that one has the ownership and control over

their own genetic information.

On the fourth of October 2021, the seventieth anniversary of the death of Henrietta Lacks, her family sued

the pharmaceutical company Thermo Fisher Scientific. Thermo Fisher Scientific currently sells the clones

1
What is a gene? MedlinePlus. 22 March 2021.

https://medlineplus.gov/genetics/understanding/basics/gene/#:~:text=In%20humans%2C%20genes%20va

ry%20in,more%20than%202%20million%20bases.&text=Every%20person%20has%20two%20copies,ar

e%20slightly%20different%20between%20people (Accessed 2022-01-04).

2
J. W. Hazel and C. Slobogin. Ability to Delete Retained Genetic Data. Collection of Genetic

Information. RESULTS. INTRODUCTION. Who Knows What, and When?: A Survey of the Privacy

Policies Proffered by U.S. Direct-to-Consumer Genetic Testing Companies. Cornell Journal of Law and

Public Policy, vol. 28, Iss. 1, Article 3, 2018: pp. 51.

of the cells of the deceased Henrietta Lacks to researchers for upwards of 2000 dollars per milliliter.

Neither permission was given by Henrietta Lacks and her family, nor did they receive any compensation.3

This is a clear example of an individual not having the ownership to her DNA.

Forensic sciences and crime investigations also questioned the possibility of one owning its genetic

information. A big part of forensic investigations uses DNA left by the convict. It was first used in 1986,

when the UK police requested Dr. Alec J. Jeffreys of University of Leicester to verify a suspect’s

confession to committing 2 rape-murders. The test proved that the suspect was innocent.4 The use of

DNA testing without the consent of the suspect showed that the individual did not own his DNA.

Moreover, various ethical and moral problems would arise if we owned our genetic information. For

example, ownership of one’s DNA would allow a person to practice morally questionable processes such

as somatic cell cloning, for medical purposes or otherwise. Some of the arguments include the

infringement of the human right, dignity and individual personality of the clone produced.5 Regardless of

artificial processes, even identical twins can cause ethical issues surrounding the topic of the ownership of

3
L. Wadsten and E. R. Mattoon. Lacks family sues Thermo Fisher. Henrietta Lacks' family sues Thermo

Fisher. 11 October 2021. https://www.jhunewsletter.com/article/2021/10/henrietta-lacks-family-sues-

thermo-fisher (Accessed 2022-01-04).

4
S. Panneerchelvam and M.N. Norazmi. Forensic Science and DNA evidence. Forensic DNA Profiling

and Database. July 2003. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3561883/ (Accessed 2022-01-

04).
5
J. R. Blesa, J. Tudela and J. Aznar. Ethical Reflection on nDNA and mtDNA Transfer. Ethical aspects

of nuclear and mitochondrial DNA transfer. May 2016.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5102202/#:~:text=SCNT%20is%20not%20ethically%20

acceptable,effects%20in%20the%20children%20born (Accessed 2022-01-04).

DNA. Since identical twins share the same set of DNA because they are from the same embryo,6 one

could argue that one twin legally owns the other one.

In conclusion, due to the various examples such as the small number of DNA testing company policies

allowing the full deletion of one’s genetic information, the suing of Thermo Fisher Scientific by Henrietta

Lacks’ family, the DNA test used in forensic sciences and the ethical and moral issues regarding the

ownership of DNA. One can say that an individual does not and should not own their genetic information.

6
Twins. The Tech Interactive. 20 July 2011. https://genetics.thetech.org/ask/ask421 (Accessed 2022-01-

04).
Reference List

Blesa, J. R., Tudela, J. and Aznar, J. Ethical Reflection on nDNA and mtDNA Transfer. Ethical aspects of

nuclear and mitochondrial DNA transfer. May 2016.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5102202/#:~:text=SCNT%20is%20not%20ethically%20

acceptable,effects%20in%20the%20children%20born (Accessed 2022-01-04).

Hazel, J. W. and Slobogin, C. Ability to Delete Retained Genetic Data. Collection of Genetic Information.

RESULTS. INTRODUCTION. Who Knows What, and When?: A Survey of the Privacy Policies

Proffered by U.S. Direct-to-Consumer Genetic Testing Companies. Cornell Journal of Law and Public

Policy, vol. 28, Iss. 1, Article 3, 2018: pp. 51.

Panneerchelvam, S. and Norazmi, M.N. Forensic Science and DNA evidence. Forensic DNA Profiling

and Database. July 2003. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3561883/ (Accessed 2022-01-

04).

Twins. The Tech Interactive. 20 July 2011. https://genetics.thetech.org/ask/ask421 (Accessed 2022-01-

04).
Wadsten, L. and Mattoon, E. R. Lacks family sues Thermo Fisher. Henrietta Lacks' family sues Thermo

Fisher. 11 October 2021. https://www.jhunewsletter.com/article/2021/10/henrietta-lacks-family-sues-

thermo-fisher (Accessed 2022-01-04).

What is a gene? MedlinePlus. 22 March 2021.

https://medlineplus.gov/genetics/understanding/basics/gene/#:~:text=In%20humans%2C%20genes%20va

ry%20in,more%20than%202%20million%20bases.&text=Every%20person%20has%20two%20copies,ar

e%20slightly%20different%20between%20people (Accessed 2022-01-04).