The Medical and Legal Legacy of Henrietta Lacks

By: Chaitali Gandhi

In 1951, doctors at Johns Hopkins Hospital biopsied Henrietta Lacks, an impoverished African American patient with an unusually aggressive cervical tumor.[1] Some of the biospecimen was given to a medical researcher without Lacks’ knowledge and consent.[2] By utilizing this biospecimen, physicians developed the world’s first human cancer cell line. Prior to this development, scientists faced difficulty with their research because they lacked cells that reproduced infinitely in a lab. Dubbed HeLa cells, this immortal cell line helped with several groundbreaking medical developments in areas including polio, herpes, leukemia, influenza, hemophilia, Parkinson’s disease, cancer, AIDS, cloning, and in vitro fertilization. [3] Lacks died a few months after her biopsy, and despite forever changing medicine, her family did not learn about the HeLa cells for almost two decades. HeLa cells became extremely lucrative due to their unique properties; however, the Lacks family received no financial benefits.[4] Furthermore, while Henrietta’s cells saved lives and allowed major medical breakthroughs, the Lacks family suffered from chronic illnesses and could not afford proper health insurance. Thus, controversy of bioethics and informed consent has followed HeLa cells. [5]

Henrietta Lacks’ story became well known in 2010 with the release of The Immortal Life of Henrietta Lacks by Rebecca Skloot; the book rapidly became popular, and with it, so did the discussion of informed consent.[6] Informed consent is “a legal procedure to ensure that a patient or client knows all of the risks and costs involved in a treatment.”[7] Further, it affords the right to patients to accept or refuse treatment and reinforces the “legal and ethical right the patient has to direct what happens to her body.”[8] It is a concept that was developed alongside a code of ethics for research on human subjects due to the Nuremberg Code and World Medical Association’s Declaration of Helsinki in 1964.[9] Accordingly, the concept of informed consent was at its earliest stages during Henrietta Lacks’ time. It took over sixty years for the Lacks family to retain some rights over HeLa cells; in 2013, the National Institute of Health and Johns Hopkins agreed to allow the family to approve future use of the cells, but without financial gain.[10] Henrietta Lacks’ story signaled a turning point for patient rights.[11]

Currently, informed consent law serves to protect patients and their right to consent and be informed of recommended procedures and treatments and also limits professional liability.[12] The physician must discuss the diagnosis, purpose of the treatment or procedure, involved risks, alternative treatments, and risks or benefits of refusing the recommended treatment.[13]

One of three standards is generally used to determine that adequate information was provided to the patient. First, reasonable physician standard asks what the typical physician would say about the intervention.[14] This standard is considered inadequate since physicians show to tell their patients little information. Moreover, this standard focuses on the physician rather than the patient, which goes against the goals of informed consent. Second, reasonable patient standard asks what the typical patient needs to know to make an informed decision.[15] Third, the subjective standard asks what a particular patient needs to know to make an informed decision.[16] This is a difficult standard to practice because it is individualized for each patient. Most states have their own legislation or precedent to define their required standard.[17]

Although Henrietta Lacks’ legacy predominantly concerns medical breakthroughs, it also helped shape modern informed consent laws.

           
[1] Jennifer K. Wagner, Genomic Research Ethics: Special Rules for HeLa Cells, Genomics L. Rep. (Aug. 27, 2013), https://www.genomicslawreport.com/wp-content/plugins/as-pdf/generate.php?post=13104.

[2] Laura M. Beskow, Lessons from HeLa Cells: The Ethics and Policy of Biospecimens, 17 Ann. Rev. of Genomics and Hum. Genetics 395, 396 (2016).

[3] Gloria L. Blackwell, Remembering Henrietta Lacks, the Woman behind HeLa Cells, AAUW (Feb. 16, 2012), http://www.aauw.org/2012/02/16/the-woman-behind-hela-cells.

[4] Beskow, supra note 2.

[5] Importance of HeLa Cells, Access Science, https://www.accessscience.com/content/importance-of-hela-cells/BR0826141 (last updated 2014).

[6] Beskow, supra note 2.

[7] Informed Consent, The Immortal Life of Henrietta Lacks, http://fyb.umd.edu/2011/informed.html (last visited Aug. 30, 2017).

[8] Jessica De Bord, Informed Consent, U. of Wash. Sch. of Med., https://depts.washington.edu/bioethx/topics/consent.html (last modified Mar. 7, 2014).

[9] Julia K. Mavromatis, HeLa, HIPAA and the Ethics of Informed Consent, ACP Internist, http://blog.acpinternist.org/2011/05/hela-hipaa-and-ethics-of-informed.html (May 12, 2011, 11:00 AM).

[10] Laura Kolaczkowski, Henrietta Lacks’ Legacy of Informed Consent, Multiple Sclerosis News Today (July 5, 2016), https://multiplesclerosisnewstoday.com/blog/2016/07/6/henrietta-lacks-legacy-of-informed-consent. (ly 5, 20

[11] Ethics of Informed Consent and the Legacy of Henrietta Lacks, Rabin Martin, http://rabinmartin.com/insight/ethics-of-informed-consent-and-the-legacy-of-henrietta-lacks (last visited Aug. 17, 2017).

[12] Informed Consent Law, HG.org Legal Resources, https://www.hg.org/informed-consent-law.html (last visited Aug. 31, 2017).

[13] Id. 

[14] Id.

[15] Id.

[16] Id.

[17] Id.

Technology Companies’ Threat to an Open Society

By: Brianna Cetrulo

Google, today’s largest disseminator of information, has also been defined as a verb meaning, “to use the Google search engine to obtain information about (someone or something) on the World Wide Web.”[1] With the ability to dictate what the world knows and thus thinks, Google currently exists as the most influential company and has undoubtedly become essential to our daily lives. However our country’s blind reliance on this site will lead to the destruction of an open society unless regulations are instituted.

Google is one of the many Internet sites that have been known to participate in censorship.[2] The tech company has continually been found to block access to certain types of information through its use of algorithms or its employees.[3] For example, in 2008 the Christian Institute brought suit after being told by Google that it prohibited advertising from sites containing abortion and religion-related content. [4] When in fact, Google sold advertising to secular groups, doctors and other resource sites advocating abortion. [5] Additionally, YouTube, which is owned by Google, has recently been found to be demonetizing videos with conservative content.[6]

In the aftermath of the horrifying events of Charlottesville, Google and other large tech companies’ power to censor has resurfaced.[7] The right of free speech protected by the First Amendment is a fundamental liberty to which tech companies are not bound.[8] Instead, these powerful entities, lacking any accountability, are utilizing their platforms to enforce ideological conformity. Despite only impacting a group of people who the majority of the country sees as vile, neo-Nazis, this abuse of power is a threat to the First Amendment and an open society.

Some examples of this censorship include how Google and GoDaddy stopped providing hosting support for a website called the Daily Stormer.[9] Airbnb has publicly stated that they will permanently ban white supremacists from using its service to book rooms.[10] Finally, PayPal also maintains that it prohibits white supremacists from using its payment platform.[11] Yet, allowing America’s fear to encourage the restriction of our fundamental right of free speech exasperates the horror of Charlottesville. In order to address tech companies’ current threat to an open society, Google should be regulated.[12]


[1] Google, Merriam-Webster Online Dictionary, https://www.merriam-webster.com/dictionary/google (last visited Aug. 31, 2017).

[2] Robert Epstein, The New Censorship, U.S. News & World Reports (June 22, 2016, 9:00 AM), https://www.usnews.com/opinion/articles/2016-06-22/google-is-the-worlds-biggest-censor-and-its-power-must-be-regulated.

[3]  Id.

[4] Stephanie Clifford, Google in Shift on ‘Abortion’ as Keyword, N. Y. Times (Sept. 21, 2008), http://www.nytimes.com/2008/09/22/technology/22google.html.

[5] Id.

[6] Ian Miles Cheong, Conservative And Independent YouTube Channels Hit By Censorship And Demonetization, Daily Caller (Aug. 11, 2017, 4:02 PM),

http://dailycaller.com/2017/08/11/conservative-and-independent-youtube-channels-hit-by-censorship-and-demonetization/.

[7] Kaya Yurieff, Should web-hosting companies restrict who's on their platforms?, CNN Tech (Aug. 14, 2017, 4:51 PM), http://money.cnn.com/2017/08/14/technology/godaddy-daily-stormer/index.html.

[8] Id.

[9] Id. 

[10] Fox News, Airbnb bans white supremacists from using its service after Charlottesville protest, Fox News (Aug. 16, 2017),

http://www.foxnews.com/travel/2017/08/16/airbnb-bans-white-supremacists-from-using-its-service-after-charlottesville-protest.html.

[11] Kaya Yurieff, PayPal is quietly cracking down on white-supremacist accounts, CNN (Aug. 16, 2017, 3:21 PM), http://money.cnn.com/2017/08/16/technology/paypal-alt-right-accounts/index.html.

[12] Ryan Grim, Steve Bannon Wants Facebook and Google Regulated like Utilities, The Intercept (July 27, 2017, 12:31 PM), https://theintercept.com/2017/07/27/steve-bannon-wants-facebook-and-google-regulated-like-utilities/.

The Rise of Fake News Through Technology and How to Regulate It

By: Emily Bayard

Technology has greatly enhanced the accessibility of information in the twenty first century. While there are significant advantages to having a plethora of information at our fingertips, there are also disadvantages. For example, within the past year, we have experienced a rise in fake news on all types of subjects. Be it Hollywood, Finance, Politics or the Sports world, fake news is ubiquitous throughout all media outlets. There has always been a threat of fake news, but it is more prevalent today because the ability to post or share information via the internet is almost instantaneous.[1] This is a cause for concern because fake news can have detrimental effects on individuals and society as a whole.

One way that fake news can be regulated is through social media companies like Facebook and Twitter. Facebook, specifically, has been heavily criticized for the amount of fake news on its site.[2] Facebook has responded with efforts to help reduce the amount of fake news and restore trust in its users.[3] In May, the company began efforts to decrease the number of posts and ads in the News Feed that do not meet its standards.[4] In early August, Facebook began using advanced technology to detect potential fake news and to fact check it.[5] When fake news is found, the fact check results are disclosed on the post.[6] Most recently, in late August, Facebook released a statement notifying the public that the company is instituting a temporary advertising ban on businesses that repeatedly share and spread fake news.[7]

Another way that fake news can be regulated is through the government. However, the term ‘fake news’ has yet to be clearly defined by law or precedent.[8] Furthermore, the idea of censorship causes much controversy and finding a balance between censorship and the First Amendment right to freedom of speech is extremely problematic. Currently, the Federal Communications Commission attempts to regulate fake news through the broadcast hoax regulation, which only applies to licensed TV and radio broadcasters.[9] The only other way that the government attempts to regulate fake news is through defamation laws.[10] A victim of fake news can seek legal redress through a civil action for defamation.[11] Defamation laws vary by state, but generally, the plaintiff must prove that the defamation was objectively false, published, quantifiably injurious, and unprotected speech.[12]

Facebook and the government may attempt to regulate fake news, but arguably the most effective way to combat fake news is through the vigilance of the people using the internet.[13] We are blasted with “breaking news” or “important update” or “this just came in” to get our attention with stories that bring in the most advertising dollars. It is imperative that internet users are able to recognize which sources are reliable and which are unreliable, and also take advantage of all this available information by looking at several different news sources. Simply put, we must be more scrupulous with the news presented to us rather than taking what we read or hear as fact.

[1] Eugene Volokh, Fake news and the law, from 1798 to now, Wash. Post (Dec. 9, 2016), https://www.washingtonpost.com/news/volokh-conspiracy/wp/2016/12/09/fake-news-and-the-law-from-1798-to-now/?utm_term=.5e99f9f8f38c.

[2] JP Mangalindan, Facebook says it will ban businesses from advertising if they share fake news, Yahoo Finance (Aug. 28, 2017), https://finance.yahoo.com/news/facebook-says-will-ban-businesses-advertising-share-fake-news-150513872.html.

[3] Id.

[4] Id.

[5] Id.

[6] Id.

[7] Id.

[8] Will Erstad, Are There Legal Ramifications to Publishing Fake News Stories?, Rasmussen College: School of Justice Studies Blog (Feb. 23, 2017), http://www.rasmussen.edu/degrees/justice-studies/blog/legal-ramifications-of-fake-news-stories/.

[9] Volokh, supra note 1.

[10] Erstad, supra note 8.

[11] Erstad, supra note 8.

[12] Erstad, supra note 8.

[13] Erstad, supra note 8.

Regulatory Capture at the FCC and the American Public

By: John K. Aleksandravicius

The debate on net neutrality centers around a simple question: is the internet a service to be a pay for play system or a utility to be regulated like electricity and water?[1] In the hours after the June 1st airing of John Oliver’s Last Week Tonight, nearly 45,000 posts were made in the comments section of the FCC’s website following Oliver’s battle cry. “This is the moment you were made for… we need you to get out there and focus your indiscriminate rage in a useful direction.”[2]

In the months after the de facto Distributed Denial of Service (DDoS) attack, then Chairman Tom Wheeler brought to vote and ultimately upheld that the Internet should enjoy greater protection as a utility under Title II of the Telecommunications Act.[3]

Also subsequent to 2014’s FCC website crash, the FCC took steps to make their website more robust.[4] This past May, in a follow up to his previous statements, Oliver accused current FCC Chairman Ajit Pai (a former Verizon lawyer) of towing a policy line in concert with the desires of his former employers to declassify the Internet as utility under Title II of the Telecommunications Act.[5] What this would eventually mean is that certain corporate entities that provide content and an ISP could throttle competitor content providers unless they paid a premium over their own brand of content.[6] This leaves companies like Netflix, Amazon, and HBO at the whim of content distributors like Verizon.[7]

Oliver again issued a call to arms for anyone listening to post to comment on the FCC website in support of the Internet’s Title II classification via a redirection mirror named (in a tongue and cheek way) www.gofccyourself.com. [8]

Lo and behold, the website, despite the upgrades came under attack and slowed to a trickle. [9] Or did it? [10] The amount of traffic that supposedly was sourced on the public facing side of the FCC’s API that would be required to crash the site would be greater than that of a similarly scaled attack (and largest ever recorded by any ISP) and visible to anyone monitoring ISPs. [11] This leads to the conclusion that the botnet access had to come from a non-public facing API access point. In other words, the botnet attack was an inside job. [12]

            In the hours following Oliver’s calling on the public to comment and support the utility classification of the Internet, a comment spam attack coincidentally occurs to drown out the voice of the public.[13] It is extremely ‘convenient’ that the attack was barely analyzed and reported on when the political and policy slant of the attackers were backing a stance supported by current FCC Chairman Ajit Pai and his former employer Verizon.[14]

            Although attempting to put a fun and ‘new’ spin on government regulation, Chairman Pai is a textbook example of regulatory capture.[15] The fresh take on his approach to bridging the boring nature of FCC regulations is a pernicious veil for his obvious special interest slant.

[1] Cecilia Kang, Court Backs Rules Treating Internet as Utility, Not Luxury, N. Y. Times (June 14, 2016), https://www.nytimes.com/2016/06/15/technology/net-neutrality-fcc-appeals-court-ruling.html.

[2] Last Week Tonight with John Oliver (HBO 2014).

[3] Telecommunications Act of 1996, 110 Stat. 56, tit. 2 (1996); see also Press Release, FCC, FCC Adopts Strong, Sustainable Rules to Protect the Open Internet (Feb. 26, 2015) (on file with author).

[4] Dr. David A. Bray, Update on FCC’s IT Upgrades, FCC: Blog (Sept. 8, 2015, 6:05 AM), https://www.fcc.gov/news-events/blog/2015/09/08/update-fccs-it-upgrades.

[5] Nilay Patel, The Internet is Fucked (Again): Why Does This Keep Happening?, The Verge (July 12, 2017, 9:00 AM), https://www.theverge.com/2017/7/12/15715030/what-is-net-neutrality-fcc-ajit-pai-bill-rules-repealed.

[6] Id.

[7] Id.

[8] Last Week Tonight with John Oliver (HBO 2017).

[9] See Hayley Tsukayama, The FCC Says an Attack - Not John Oliver - Hampered its Website, Wash. Post: The Switch (May 9, 2017), https://www.washingtonpost.com/news/the-switch/wp/2017/05/08/the-fcc-says-an-attack-not-john-oliver-hampered-its-website/.

[10] See FCC.gov Current Status, CurrentlyDown.com, http://currentlydown.com/fcc.gov#2017-05-07 (last visited Aug. 31, 2017); see also FCC.gov Current Status, CurrentlyDown.com, http://currentlydown.com/fcc.gov#2017-05-08 (last visited Aug. 31, 2017).

[11] KrebsOnSecurity Hit With Record DDoS, KrebsonSecurity (Sept. 22, 2017, 8:33 AM), https://krebsonsecurity.com/2016/09/krebsonsecurity-hit-with-record-ddos/.

[12] Tsukayama, supra note 9.

[13] Nathaniel Fruchter, FCC Comment Visualizations, GitHub, https://github.com/nhfruchter/fcc-spam-comments-17108/tree/master/visualizations (last modified May 16, 2017).

[14] Dell Cameron, FCC Now Says There Is No Documented ‘Analysis’ Of the Cyberattack It Claims Crippled Its Website in May, Gizmodo (July 21, 2017, 8:00 PM), https://www.gizmodo.com.au/2017/07/fcc-now-says-there-is-no-documented-analysis-of-the-cyberattack-it-claims-crippled-its-website-in-may/.

[15] Kelcee Griffis, For FCC's Pai, Pop Culture Is A Bridge To Policy, Law360 (Aug. 8, 2017, 9:05 PM), https://www.law360.com/articles/951915/for-fcc-s-pai-pop-culture-is-a-bridge-to-policy.