DNA & Privacy

Table of Contents

Abstract
Introduction
Brief Summary of Sampling DNA
Problem Statement
Solution
Conclusion
References

List of Figures

Figure 1
Figure 2

Abstract

This paper gives you an understanding on a new technology coming into to play that could potentially figure out your genetic makeup with just a click. Websites including; 23andMe, Ancestry.com, and GEDmatch continue to distract people away from the fine print that is included in their policies. The companies are creating policies that allow them to do whatever with your genetic information and just about any data or statistics that they can pull up in regards to your family heritage. The introduction of genetic sampling to the general public brings one of the biggest ethical dilemmas our modern society has seen. As such, treating our genes as light heartedly as we are currently are, is a recipe for disaster as genetic technology continues to advance. In the case of the Golden State Killer, the lack of any genetic privacy protection policies resulted in the prosecution of Joseph James DeAngelo, accused of over a dozen accounts of both murders and rape across the state of California. The catch in this case is that it was originally opened in the 1970’s when these criminal acts occurred. Once DNA tests were available, many investigators were able to confirm the identification of relatives that have committed crimes.

A Brief Summary of how 23andMe Samples DNA

To give a better idea of how these genetic sampling companies recover your DNA, a visual explanation has been included below. Figure 1 shows what 23andme.com will send to their customers as a part of their saliva sample collection kit. The steps are as followed: First, collect the recommended volume of saliva. Your saliva should be just above the fill line. Next, provide your sample and add the stabilization buffer within 30 minutes, which if waiting longer than 30 minutes may decrease the yield and quality of your DNA. Cap securely before shipping the tub provided, and place the collection tube containing your sample in the plastic specimen bag. Lastly, drop the package off at any US Postal Service Mail Box.

Introduction

The use of genetic sampling to the general public is a relatively new concept, as ancestral DNA testing was first launched and introduced in 2007. Websites such as 23andme.com and Ancestry.com currently offer convenient genetic sampling services to those who are curious about their family heritage and where their blood line originates from. These websites market themselves in an innocent and light hearted way, presenting their “DNA database” as something that will be used strictly for the services that they advertise. The current issue with websites such as these, lies within the privacy policies or lack thereof.

The typical consumer may enroll in a service offered by 23andme.com or Ancestry.com, receive their results, and move on with their lives not thinking twice about the information they just freely offered to a relatively open database. While you may have already received your family heritage results, these websites don’t just simply delete your genetic data from their system. Their collective database is just that, every sample they receive is stored and kept within their systems. This is where our subject issue comes into play, as there is nothing stopping a government branch from dipping into the database and taking any and all information they need. When looking at the Golden State Killer case, this is precisely what happened.

In the case of the Golden State Killer, the lack of any genetic privacy protection policies resulted in the prosecution of a man accused of over a dozen counts of both murders and rapes across California. The catch in this case is that it was originally opened in the 1970’s when these criminal acts occurred. Between then and recently, there was never enough evidence to track down any particular subject, which left the case closed and never solved. The only reason the case was reopened and solved recently was due to a new forensics tactic that the FBI put into play. The tactic consists of using the FBI’s genetic database for known and suspected felons, and cross referencing the database with those of websites such as 23andme.com and Ancestry.com. The lack of any real “privacy policy” on these websites allows the FBI to freely take any information they need. In the case of the Golden State Killer, the genetic information the FBI had was matched to the 23andme.com database, and eventually after chasing the trail of breadcrumbs, allowed for an arrest to be made on a 40 year old case. While catching guilty criminals is a fantastic way to use this technology, there needs to be protections put in place for those who willingly give up their genetic sample. The Golden State Killer tactic is just the tip of the iceberg for the potential that tracking genetic samples has. Without restrictions and legal action, a government controlled genetic database could potentially lead to a future of completely unfair and unjust legal trials.

Problem Statement

Between now and the recent past, there was never enough evidence to track down any particular subject. Due to the fact that the technologies today were not invented at the time of the case, the Golden State Killer was never caught. The investigators on the Golden State Killer case tracked down DeAngelo based on genetic information obtained through a basic DNA sample. Treating our genes as light heartedly as we are currently is a recipe for disaster as genetic technology continues to advance. Websites such as 23andme.com and Ancestry.com continue to distract people away from the fine print that is included in their policies. Fine print that allows them to basically do as they please with your genetic information and just about any data or statistics that they can pull up in regards to your family heritage. These are malpractices that many consumers blatantly ignore as they are simply misinformed. The typical consumer of these services fails to think twice about what may occur with their information once they uncover their family tree.

An Outside source suggests that in an legal system, Forensic DNA data banks should raise concerns about questionable justice. The legal system represents a non-skeptical and objective standpoint unlike what science is. It is this objectivity that differentiates science and law. According to Jasanoff (2006) “Will science itself may hold truth, humans still have a role in the production and interpretation of the evidence; hence the issue becomes.” Us as human beings tend to overlook details even with proper scientific knowledge which can lead to mistakes. Using genetic testing can cause law enforcers to analyze suspects in light of the genes. This viewpoint would ignore social and biological factors that may influence behavior and illustrate the political and social view that one’s DNA is one’s identity. Figure 1 represents contributing causes confirmed through innocence exonerated by DNA testing. Only a fraction of criminal causes involve biological evidence that can be subjected to testing genoms, and even when such evidence exists, it is often lost or destroyed after a conviction.

State laws about DNA testing often neglect issues of privacy protection by allowing complete disclosure of genetic information. Jasanoff also states (2006) “Apprehension over suspect databases, which consists of DNA collected without any probable cause. These organizations also increase the chance of discrimination and targeting certain types of people as criminals.” possession or control of DNA samples heightens the chance that it will be misused. Databases are on the line of violating constitutional rights of individuals that are forced to surrender their genetic information.

Proposed Solution

While the role of a genetic sampling website did result in the closure of the Golden State Killer case and the prosecution of a criminal, the practice of acquiring the evidence could potentially be seen as unethical. If this is continued to be practiced in future cases, the system will be further streamlined and pushed to become more efficient, eventually allowing it to be used on much smaller cases and even in smaller, local judiciary systems. This would mean that any user of a genetic sampling website, and potentially even non-users, would be put at a large disadvantage in the court of law, compared to those who choose not to use them. Our team sees this as a potentially unjust and unfair practice, which should not be brought into the mainstream justice system.

Our suggestion for a potential solution would be to form a bill requiring all genetic testing services to have strict privacy policies with in regards to the consumers’ genetic information. This would ensure that genetic sampling services would be held accountable for any wrongdoing with their customers’ information. This includes not only non-government affiliated 3rd parties accessing the information, but government branches as well. The purpose for the bill would be to prevent the general public’s genetic information from being used regularly in all types of legal cases. The intention of this bill would not be to interfere with major legal investigations and prevent potentially valuable evidence from being accessible by government branches such as the FBI or CIA. Our team sees the best solution in a bill that would enforce strict privacy policies on genetic sampling services, while allowing for it to be repealed in certain cases when the information could be considered vital for the greater good of the people.

Conclusion

Under the fourth, fifth, and ninth American amendments, Search and Seizure, Self Incrimination, and Non-Enumerated Rights, respectively, Fernandez brings up the question (2005) of when genetics can be used in law. With our advancements in the ability to collect, store genetic information, privacy and DNA data banks that require sex offenders and violent criminals to forfeit their DNA so they can be tracked if a crime is committed. This data can be used for insurance companies, the workplace, and the government. According to another source, Rothstein (1999) “They have no effect on the instances in which individuals can be required to release genetic and other medical information as a condition of employment, insurance, education and other matters.” What he speaks of ‘they’ is our legislation on what has been labeled “genetic privacy” with the prohibition of unauthorized collection, or disclosure of genetic information. An individual's DNA contains thousand of bits of data that include genetic history, drug use, and hereditary elements, which could be used in a discrimination act. Society is capable of generating DNA evidence that is free from bias, with human beings’ tendency to overlook details can additionally lead to mistakes.

References

AncestryDNA- Frequently Asked Questions.
https://www.ancestry.com/dna/en/legal/us/faq

Chakrabarty, A. (2011). Where Is the Balance of Justice? BioScience, 61(10), 834-836. doi:10.1525/bio.2011.61.10.18 Jstor.

Committee on DNA Technology in Forensic Science. (1992). DNA Technology in Forensic Science. Washington, D.C.: National Academy Press.

Crimesider Staff, (2018, April 27). Privacy concerns after public genealogy database used to ID “Golden State Killer” suspect.
https://www.cbsnews.com/news/privacy-concerns-after-public-genealogy-database-used-to-id-golden-state-killer-suspect/

Fernandez, H. (2005). Genetic Privacy, Abandonment, and DNA Dragnets: Is Fourth Amendment Jurisprudence Adequate? The Hastings Center Report.

H.R. 493 (110th): Genetic information Nondiscrimination Act of 2008.
https://www.govtrack.us/congress/bills/110/hr493/text

Jasanoff, J.D Sheila, Ph.D (2006, June 16). Just Evidence: The limits of Science in the Legal Process.
https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1748-720X.2006.00038.x

Patyn, A., & Dierickx, K. (2010). Forensic DNA databases: Genetic testing as a societal choice. Journal of Medical Ethics, 36(5), 319-320.
http://ntserver1.wsulibs.wsu.edu:2135/stable/25699662

Reynolds, A. Kenline., (2016, January 11). The Causes of Wrongful Conviction.
https://www.toddklaw.com/media-resources/news-and-events/wrongful-convictions

Rothstein, Mark. (Nov-Dec, 1999). "The Impact of Behavioral Genetics on the Law and the Courts," Judicature.

Kolata, G. Heather M.(2018, April 27). The Golden State Killer Is Tracked Through a Thicket of DNA, and Experts Shudder. The New York Times, p. 1.

Scutti, S. (2018, May 1). What the Golden state Killer Case Means for Your Genetic Privacy.
https://www.cnn.com/2018/04/27/health/golden-state-killer-genetic-privacy/index.html

Sklansky, D. (2014). How Not to Think About Privacy and the Fourth Amendment. California Law Review, 1069-1121.
http://ntserver1.wsulibs.wsu.edu:2135/stable/24758163

Sufian, J. (1991). Forensic Use Of DNA Tests: Courts Need Ways To Assess The Reliability Of New Scientific Methods. BMJ: British Medical Journal.
http://ntserver1.wsulibs.wsu.edu:2135/stable/29712165