Ethics

Three’s a Crowd: Identifying the Shifting Parental Rights in Three-Parent Babies

October 3, 2016
Administrative Law, Ethics, Food and Drug Law, New Technology

Daniel Green, MJLST Staffer

Once again, science is spurring the law to adapt in ways it never could have predicted. A baby boy was recently born with genetic material of three different people. Aside from being born slightly premature, the now three-month-old child is very healthy. Even though three-parent techniques have been used before, this child marked the first healthy birth.

Given the obvious religious, safety, and ethical disputes behind such a medical procedure it may seem unclear as to why anyone would want to go through with it. The answer, however, avoids the arguments that the procedure is simply done to “play God” or for polyamorous relationships. The mother underwent the treatment to ensure both the happiness of parents and the health the child.

In this instance, the mother carried genetic defects identified to cause Leigh syndrome. This disorder which affects the brain resulted in the mother having had four pregnancy losses in addition to the death of two previous children at the ages of 8 months and 6 years. Leigh syndrome is caused by defects in a cells mitochondria, and the three-parent treatment was able to bypass the damaged mitochondrial DNA.

The process involves implanting the mother’s DNA into an egg from a donor. The egg has the donor’s main genetic DNA removed prior. The egg is then fertilized with sperm from the father. This process allows the DNA from the mother to pass down virtually unchanged since “mitochondrial DNA makes up less than 1% of the total cellular DNA.” However, small amounts of the donor’s mitochondrial DNA are still left throughout the child’s body.

The treatment was done in Mexico involving a team of fertility specialists from the United States and Great Britain. The procedure took place in Mexico since the treatment used has not yet been approved in the United States by the Food and Drug Administration, but this may not be the case for long due, in part, to recent successes. Another indicator of this possible change is that the treatment has already been approved in Britain.

Given this rapidly changing landscape, the law, in particular regarding parental rights, needs to somehow catch up quickly on an incredibly complex topic. As the donor parent will only be contributing 37 genes out of the total 22,000, it is likely that a donor’s right will be the most contested. Given the precedent already set forth, courts may adopt one of several strategies if and when three-parent babies are no longer barred in the United States.

The donor parent has no legal claims: This would be similar to the mostly commonly accepted view concerning to sperm donors. In most states, if a sperm is donated through a licensed medical professional then the donor loses all legal claims to the child unless the parents are married. It seems logical that the treatment of an egg donor, in a three-parent situation, would be similar given what the term “donor” implies. Great Britain, which has already approved the three-parent treatment, has already adopted a stance similar to this. However, states are in contention regarding of parental rights and even custody of traditional style egg donors. Given the distribution of DNA it may be easier for a court to rule against the egg donor, but this is still very unclear.

The donor parent has an equal claim to the child: California has already passed a version of a three-parent law, but this was mainly for same-sex couples who wish to have the donor on the birth certificate as well. However, the process leaves the door open for unintended parents, such as the donors, to assert claims over a child. In such a case, a court may find that, despite the objections of two parents, the donor has a right to be considered as a parent. Instances of this have already come up in traditional sperm and egg donation. Such conflicts could create a great degree of instability for the life of the child.

The parties agree through a contract prior to the treatment as to what claims exist: The last apparent possibility is that parties may be able to contractually agree what their family is to look like. This would likely create the most amiable way to go about the process, but it is time-consuming and still may run into problems with the existing laws of certain states.

Clearly, there is no solid answer regarding three-parent babies even though three-parent birth certificates are already becoming more common in the United States. It seems like it is only a matter of time before three-parent babies are introduced into the culture as well. This leaves the question as to whether the law will be ready in time so as to hopefully create a circumstance that, whatever the family may look like, is best for the child.

The Comment on the Note “Best Practices for Establishing Georgia’s Alzheimer’s Disease Registry” of Volume 17, Issue 1

April 27, 2016
Biotechnology, Data, Ethics, Healthcare, Privacy, Public Health

Jing Han, MJLST Staffer

Alzheimer’s disease (AD), also known just Alzheimer’s, accounts for 60% to 70% of cases of dementia. It is a chronic neurodegenerative disease that usually starts slowly and gets worse over time. The cause of Alzheimer’s disease is poorly understood. No treatments could stop or reverse its progression, though some may temporarily improve symptoms. Affected people increasingly rely on others for assistance, often placing a burden on the caregiver; the pressures can include social, psychological, physical, and economic elements. It was first described by, and later named after, German psychiatrist and pathologist Alois Alzheimer in 1906. In 2015, there were approximately 48 million people worldwide with AD. In developed countries, AD is one of the most financially costly diseases. Before many states, including Georgia, South Carolina, passed legislation establishing the Registry, many private institutions across the country already had made tremendous efforts to establish their own Alzheimer’s disease registries. The country has experienced an exponential increase of people who are diagnosed with Alzheimer’s disease. More and more states have begun to have their own Alzheimer’s disease registry.

From this Note, the Registry in Georgia has emphasized from the outset, the importance of protecting the confidentiality of patent date from secondary uses. This Note explores many legal and ethical issues raised by the Registry. An Alzheimer’s disease patient’s diagnosis history, medication history, and personal lifestyle are generally confidential information, known only to the physician and patient himself. Reporting such information to the Registry, however, may lead to wider disclosure of what was previously private information and consequently may arouse constitutional concerns. It is generally known that the vast majority of public health registries in the past have focused on collection of infectious disease data, registries for non-infectious diseases, such as Alzheimer’s disease, diabetes, and cancer have been recently created. It is a delicate balance between the public interest and personal privacy. It is not a mandatory requirement to register because Alzheimer is not infectious. After all, people suffering from Alzheimer’s often face violations of their human rights, abuse and neglect, as well as widespread discrimination from the other people. When a patient is diagnosed as AD, the healthcare provider, the doctor should encourage, rather than compel patients to receive registry. Keeping all the patients’ information confidential, enacting the procedural rules to use the information and providing some incentives are good approaches to encourage more patients to join the registry.

Based on the attention to the privacy concerns under federal and state law, the Note recommend slightly broader data sharing with the Georgia Registry, such as a physician or other health care provider for the purpose of a medical evaluation or treatment of the individual; any individual or entity which provides the Registry with an order from a court of competent jurisdiction ordering the disclosure of confidential information. What’s more, the Note mentions there has the procedural rules designated to administer the registry in Georgia. The procedural rules involve clauses: who are the end-users of the registry; what type of information should be collected in the registry; how and from whom should the information be collected; and how should the information be shared or disclosed for policy planning for research purpose; how the legal representatives get authority from patient.

From this Note, we have a deep understanding of Alzheimer’s disease registry in the country through one state’s experience. The registry process has invoked many legal and moral issues. The Note compares the registry in Georgia with other states and points out the importance of protecting the confidentiality of patient data. Emphasizing the importance of protection of personal privacy could encourage more people and more states to get involved in this plan.

The Data Dilemma for Cell Phone Carriers: To Throttle or Not to Throttle? FTC Seeks to Answer by Suing AT&T Over Speed Limitations for Wireless Customers

November 11, 2014
Business Law, Ethics, Internet

Benjamin Borden, MJLST Staff Member

Connecting to the Internet from a mobile device is an invaluable freedom in the modern age. That essential BuzzFeed quiz, artsy instagram picture, or new request on Friendster are all available in an instant. But suddenly, and often without warning, nothing is loading, everything is buffering, and your once treasured piece of hand-held computing brilliance is no better than a cordless phone. Is it broken? Did the satellites fall from the sky? Did I accidentally pick up my friend’s blackberry? All appropriate questions. The explanation behind these dreadfully slow speeds, however, is more often than not a result of data throttling courtesy of wireless service providers. This phenomenon arises from the use of unlimited data plans on the nation’s largest cell phone carriers. Carriers such as AT&T and Verizon phased out their unlimited data plans in 2010 and 2011, respectively. This came just a few years after requiring unlimited data plans for new smartphone purchases. Wireless companies argue that tiered data plans offer more flexibility and better value for consumers, while others suggest that the refusal to offer unlimited data plans is motivated by a desire to increase revenue by selling to data hungry consumers.

Despite no longer offering unlimited data plans to new customers, AT&T has allowed customers who previously signed up for these plans to continue that service. Verizon also allows users to continue, but refuses to offer discounts on new phones if they keep unlimited plans. Grandfathering these users into unlimited data plans, however, meant that wireless companies had millions of customers able to stream movies, download music, and post to social media without restraint, and more importantly, without a surcharge. Naturally, this was deemed to be too much freedom. So, data throttling was born. Once a user of an unlimited data plan goes over a certain download size, 3-5GB for AT&T in a billable month, their speeds are lowered by 80-90% (to 0.15 mbps in my experience). This speed limit makes even the simplest of smartphone functions an exercise in patience.

I experienced this data throttling firsthand and found myself consistently questioning where my so-called unlimited data had escaped to. Things I took for granted, like using Google Maps to find the closest ice cream shop, were suddenly ordeals taking minutes rather than seconds. Searching Wikipedia to settle that argument with a friend about the plot of Home Alone 4? Minutes. Requesting an Uber? Minutes. Downloading the new Taylor Swift album? Forget about it.

The Federal Trade Commission (FTC) understands this pain and wants to recoup the losses of consumers who were allegedly duped by the promise of unlimited data, only to have their usage capped. As a result, the FTC is suing AT&T for misleading millions of consumers about unlimited data plans. After recently consulting with the Federal Communications Commission (FCC), Verizon decided to abandon its data throttling plans. AT&T and Verizon argue that data throttling is a necessary component of network management. The companies suggest that without throttling, carrier service might become interrupted because of heavy data usage by a small group of customers.
AT&T had the opportunity to settle with the FTC, but indicated that it had done nothing wrong and would fight the case in court. AT&T contends that its wireless service contracts clearly informed consumers of the data throttling policy and those customers still signed up for the service. Furthermore, there are other cellular service options for consumers that are dissatisfied with AT&T’s terms. These arguments are unlikely to provide much solace to wireless customers shackled to dial-up level speeds.
If there is a silver lining though, it is this: with my phone acting as a paperweight, I asked those around me for restaurant recommendations rather than turning to yelp, I got a better understanding of my neighborhood by finding my way rather than following the blue dot on my screen, and didn’t think about looking at my phone when having dinner with someone. I was proud. Part of me even wanted to thank AT&T. The only problem? I couldn’t tweet @ATT to send my thanks.

The Data Dilemma for Cell Phone Carriers: To Throttle or Not to Throttle? FTC Seeks to Answer by Suing AT&T Over Speed Limitations for Wireless Customers

November 11, 2014
Business Law, Ethics, Internet

Benjamin Borden, MJLST Staff Member

Connecting to the Internet from a mobile device is an invaluable freedom in the modern age. That essential BuzzFeed quiz, artsy instagram picture, or new request on Friendster are all available in an instant. But suddenly, and often without warning, nothing is loading, everything is buffering, and your once treasured piece of hand-held computing brilliance is no better than a cordless phone. Is it broken? Did the satellites fall from the sky? Did I accidentally pick up my friend’s blackberry? All appropriate questions. The explanation behind these dreadfully slow speeds, however, is more often than not a result of data throttling courtesy of wireless service providers. This phenomenon arises from the use of unlimited data plans on the nation’s largest cell phone carriers. Carriers such as AT&T and Verizon phased out their unlimited data plans in 2010 and 2011, respectively. This came just a few years after requiring unlimited data plans for new smartphone purchases. Wireless companies argue that tiered data plans offer more flexibility and better value for consumers, while others suggest that the refusal to offer unlimited data plans is motivated by a desire to increase revenue by selling to data hungry consumers.

Despite no longer offering unlimited data plans to new customers, AT&T has allowed customers who previously signed up for these plans to continue that service. Verizon also allows users to continue, but refuses to offer discounts on new phones if they keep unlimited plans. Grandfathering these users into unlimited data plans, however, meant that wireless companies had millions of customers able to stream movies, download music, and post to social media without restraint, and more importantly, without a surcharge. Naturally, this was deemed to be too much freedom. So, data throttling was born. Once a user of an unlimited data plan goes over a certain download size, 3-5GB for AT&T in a billable month, their speeds are lowered by 80-90% (to 0.15 mbps in my experience). This speed limit makes even the simplest of smartphone functions an exercise in patience.

I experienced this data throttling firsthand and found myself consistently questioning where my so-called unlimited data had escaped to. Things I took for granted, like using Google Maps to find the closest ice cream shop, were suddenly ordeals taking minutes rather than seconds. Searching Wikipedia to settle that argument with a friend about the plot of Home Alone 4? Minutes. Requesting an Uber? Minutes. Downloading the new Taylor Swift album? Forget about it.

The Federal Trade Commission (FTC) understands this pain and wants to recoup the losses of consumers who were allegedly duped by the promise of unlimited data, only to have their usage capped. As a result, the FTC is suing AT&T for misleading millions of consumers about unlimited data plans. After recently consulting with the Federal Communications Commission (FCC), Verizon decided to abandon its data throttling plans. AT&T and Verizon argue that data throttling is a necessary component of network management. The companies suggest that without throttling, carrier service might become interrupted because of heavy data usage by a small group of customers.
AT&T had the opportunity to settle with the FTC, but indicated that it had done nothing wrong and would fight the case in court. AT&T contends that its wireless service contracts clearly informed consumers of the data throttling policy and those customers still signed up for the service. Furthermore, there are other cellular service options for consumers that are dissatisfied with AT&T’s terms. These arguments are unlikely to provide much solace to wireless customers shackled to dial-up level speeds.
If there is a silver lining though, it is this: with my phone acting as a paperweight, I asked those around me for restaurant recommendations rather than turning to yelp, I got a better understanding of my neighborhood by finding my way rather than following the blue dot on my screen, and didn’t think about looking at my phone when having dinner with someone. I was proud. Part of me even wanted to thank AT&T. The only problem? I couldn’t tweet @ATT to send my thanks.

Open Patenting, Innovation, and the Release of the Tesla Patents

November 11, 2014
Business Law, Ethics, Intellectual Property, Patents, Social Media

Blake Vettel, MJLST Staff Member

In Volume 14 Issue 2 of the Minnesota Journal of Law, Science & Technology, Mariateresa Maggiolino and Marie Lillá Montagnani proposed a framework for standardized terms and conditions for Open Patenting. This framework set forth a standard system for patent holders to license their patents in order to encourage open innovation, in a way that was easy to administer for patent holders of all sizes. Maggiolino and Montagnani argued for an open patenting scheme in which the patent owner would irrevocably spread their patented knowledge worldwide, based on non-exclusive and no-charge licensing. Futhermore, the licensing system would be centrally operated online and allow the patentee to customize certain clauses in the licensing agreement; while maintaining a few compulsory clauses such as a non-assertion pledge that would keep the license open.

On June 12, 2014 Elon Musk, CEO of Tesla Motors, shocked the business world by announcing via blog post that “Tesla will not initiate patent lawsuits against anyone who, in good faith, wants to use our technology.” Musk described his reasoning for opening Tesla’s patents for use by others as a way to encourage innovation and growth within the electric car market, and depicted Tesla’s true competition as gasoline cars instead of electric competitors. By allowing use of their patented technology, Tesla hopes to develop the electric car market and encourage innovation. Some commentators have been skeptical about the altruistic motive behind releasing the patents, arguing that it may in fact be a move intended to entice other electric car manufacturers to produce cars that are compatible with Tesla’s patented charging stations in an effort to develop the network of stations around the country.

However, Musk did not unequivocally release these patents; instead he conditioned their subsequent use upon being in “good faith.” What constitutes a good faith use of Tesla’s technology is not clear, but Tesla could have instead opted for a standardized licensing system as proposed by Maggiolino and Montagnani. A clear standardized licensing scheme with compulsory clauses designed to encourage free movement of patented technology and spur innovation may have been more effective in promoting use of Tesla’s patents. An inventor who wants to use Tesla’s patents may be hesitant under Musk’s promise not to initiate lawsuits, where he could be much more confident of his right to use the patented technology under a licensing agreement. The extent to which Tesla’s patents will be used and their effect on the car market and open innovation is yet to be seen, as is the true value of Tesla’s open innovation.

FCC Issues Notice of Proposed Rulemaking to Ensure an Open Internet, Endangers Mid-Size E-Commerce Retailers

October 29, 2014
Business Law, Ethics, Internet

Emily Harrison, MJLST Staff

The United States Court of Appeals for the D.C. Circuit twice struck down key provisions of the Federal Communication Commission’s (FCC) orders regarding how to ensure an open Internet. The Commission’s latest articulation is its May 15, 2014 notice of proposed rulemaking, In the Matter of Protecting the Open Internet. According to the proposed rulemaking, it seeks to provide “broadly available, fast and robust Internet as a platform for economic growth, innovation, competition, free expression, and broadband investment and deployment.” The notice of proposed rulemaking includes legal standards previously affirmed by the D.C. Circuit in Verizon v. FCC, 740 F.3d 623 (2014). For example, the FCC relies on Verizon for establishing how the FCC can utilize Section 706 of the Telecommunications Act of 1996 as its source of authority in promulgating Open Internet rules. Additionally, Verizon explained how the FCC can employ a valid “commercially reasonable” standard to monitor the behavior of Internet service providers.

Critics of the FCC’s proposal for network neutrality argue that the proposed standards are insufficient to ensure an open Internet. The proposal arguably allows broadband carriers to offer “paid prioritization” services. The sale of this prioritization not only leads to “fast” and “slow” traffic lanes, but also allows broadband carriers to charge content providers for priority in “allocating the network’s shared resources,” such as the relatively scarce bandwidth between the Internet and an individual broadband subscriber.

Presuming that there is some merit to the critics’ arguments, if Internet Service Providers (ISPs) could charge certain e-commerce websites different rates to access a faster connection to customers, the prioritized websites could gain a competitive advantage in the marketplace. Disadvantaged online retailers could see a relative decrease in their respective revenue. For example, without adequate net neutrality standards, an ISP could prioritize certain websites, such as Amazon or Target, and allow them optimal broadband speeds. Smaller and mid-sized retail stores may only have the capital to access a slower connection. As a result, customers would consistently have a better retail experience on the websites of larger retailers because of the speed in which they can view products or complete transactions. Therefore, insufficient net neutrality policies could potentially have a negative effect on the bottom line of many e-commerce retailers.

Comments can be submitted in response to the FCC’s notice of proposed rulemaking at: http://www.fcc.gov/comments

Cable TV Providers and the FCC’s Policy-Induced Competition Amidst Changing Consumer Preferences

October 3, 2014
Administrative Law, Business Law, Ethics, Internet

Daniel Schueppert, MJLST Executive Editor

More and more Americans are getting rid of their cable TV and opting to consume their media of choice through other sources. Roughly 19% of American households with a TV do not subscribe to cable. This change in consumer preferences means that instead of dealing with the infamous “Cable Company Runaround” many households are using their internet connection or tapping into local over-the-air broadcasts to get their TV fix. One of the obvious consequences of this change is that cable TV providers are losing subscribers and may become stuck carrying the costs of existing infrastructure and hardware. Meanwhile, the CEO of Comcast’s cable division announced that “it may take a few years” to fix the company’s customer experience.

In 2011 Ralitza A. Grigorova-Minchev and Tomas W. Hazlett published an article entitled Policy-Induced Competition: The Case of Cable TV Set-Top Boxes in Volume 12 Issue 1 of the Minnesota Journal of Law, Science & Technology. In their article the authors noted that despite the FCC’s policy efforts to bring consumer cable boxes to retail stores like Best Buy, the vast majority of cable subscribing households in America received their cable box from their cable TV operators. In the national cable TV market the two elephants in the room are Comcast and Time Warner Cable. One of these two operators are often the only cable option in certain areas and together they provide over a third of the broadband internet and pay-TV services in the nation. Interestingly, Comcast and Time Warner Cable are currently pursuing a controversial $45 billion merger and in the process both companies are shrewdly negotiating concessions by TV networks and taking shots at Netflix in FCC filings.

The current fad of cutting cable TV implicates a pushback against the traditional policy of vertically integrating media, infrastructure, customer service, and hardware like cable boxes into one service. In contrast to the expensive cable box hardware required and often provided by traditional cable, internet media streaming onto a TV can usually be achieved by any number of relatively low cost and multi-function consumer electronic devices like Google’s Chromecast. This arguably gives customers more control over their media experience by providing the ability to choose which hardware-specific services they bring into their home. If customers no longer want to be part of this vertical model, big companies like Comcast may find it difficult to adjust to changing consumer preferences given the considerable regulatory pressure discussed in Grigorova-Minchev and Hazlett’s article.

Lies, Damn Lies, and Facts

April 10, 2014
Biotechnology, Ethics

David B. Tibbals, MJLST Staff

Apparently Daniel Patrick Moynihan wasn’t referring to the legal profession when he argued that “everyone is entitled to his own opinions, but not his own facts.”

This past week, the U.S. Court of Appeals for the Fifth Circuit issued its ruling in Planned Parenthood v. Abbott, taking exception to the district court’s version of the facts. The court’s ruling upheld some provisions of House Bill 2, the Texas law that inspired the hours-long filibuster by Texas state senator Wendy Davis.

In an opinion authored by Judge Edith Jones, the court ruled as constitutional the law’s requirement of doctors to have admitting privileges at a hospital within thirty miles of wherever they perform an abortion procedure. With a critical view of the district court’s factual assessment, the court held that the thirty-mile admitting-privileges requirement does not “affect a significant (much less “large”) fraction of . . . women, and it imposes on other women in Texas less of a burden than the waiting-period provision upheld in Casey.”

Likewise, the court upheld the law’s proscription of off-label usage of abortion-inducing prescription drugs. Despite a claim that this represented the complete embargo of what may be the only safe abortion procedure for some women, the court characterized this as speculation, cautioning that courts “must base decisions on facts, not hypothesis and speculation.” And, as has been noted in this journal, “while FDA-approved indications cannot be construed to limit medical judgment, states . . . may enact legislation forcing compliance with such indications.”

Given the general awareness of the case, an arguable circuit split, and the torrent of recent state abortion legislation, surely this case seems destined for the Supreme Court. But how can the nine justices possibly reach a conclusion if the two lower courts couldn’t even agree on the facts? Didn’t the Roe Court argue that abortion law must be “free of emotion and of predilection,” premised on factual objectivity? Shouldn’t these questions be easy to answer?

The disagreement within this particular case reflects a greater problem within the nation’s abortion law canon. In the forty years since Roe, courts have struggled to consistently define just what virtues ought to guide abortion law.

Although the Court placed great emphasis on “now-established medical fact” from the outset, a closer look suggests that medical facts haven’t been treated nearly as sacred as one might believe. Indeed, as Forsythe and Kehr note, the factual record in Roe was very much abbreviated and curated: The Court’s ruling “was based on no factual record and no reliable medical data. The Justices did not analyze, let alone regulate, the contrary data; they simply ignored them.”

Over the last forty years, the Court has bandied about terms such as “advanced knowledge” and “substantial medical authority,” suggesting the primacy of medical facts. But regardless of how it has treated the particular facts it has examined, the Court has also failed to consistently adhere to the fundamental objectivity professed in Roe. Although the Court felt its ruling in Casey reaffirmed Roe’s objectivity, its “undue burden” standard introduced a great deal of subjectivity into abortion law. As Justice Scalia articulated in Stenberg, what qualifies as an “undue burden” “cannot be demonstrated true or false by factual inquiry or legal reasoning.”

It is yet unclear whether Abbott will indeed make it to the Supreme Court. No matter your view on the legal status of abortion, this fundamental inconsistency in the application of factual standards ought to be distressing. It is vital that the Supreme Court clarify a jurisprudence once labeled by former Chief Justice Rehnquist as “a virtual Procrustean bed.”

Revisiting the Legality of Physician-Assisted Suicide

March 28, 2014
Biotechnology, Ethics

Alison Key, MJLST Staff

Already this year, two states have expanded options for physician-assisted suicide (PAS) by striking all or part of statutes designed to criminalize the end of life treatment.

In January, a state trial court in New Mexico reviewed NMSA § 30-2-4, which prohibits physician-assisted suicide. The New Mexico trial court ruled that patients have a right under the State’s due process clause to choose to pursue a physician’s aid in dying, therefore the state law violated the state’s constitution. Commentators expect this ruling to be reviewed by the New Mexico Supreme Court, or possibly expanded to other districts through similar trial court decisions.

In Minnesota, the victory was smaller, but application more widespread. Last week, the Minnesota Supreme Court struck portions of the Minnesota law prohibiting assisted suicide as unconstitutional. The Minnesota Supreme Court held that the Minn. Stat. § 609.215, which prohibits “intentionally advis[ing], encourag[ing], or assit[ing] another in taking the other’s own life” was in conflict with First Amendment rights to free speech. Of the three actions prohibited in the statute, “advising” and “encouraging” suicide, the Minnesota Supreme Court ruled, are protected under the First Amendment.

While the Minnesota case was determined on constitutional grounds largely irrelevant to the ethics of PAS, both the Minnesota and New Mexico decisions have contributed to the larger, national trend of eliminating the legal barriers to PAS as a medical treatment. These two recent cases are significant in the larger debate on physician- and health care provider-assisted suicide, which has been gaining increased attention in recent years.

Minnesota and New Mexico, before this year, belonged to a majority of states that banned assisted suicide. (A few states, like Minnesota, also banned “encouraging” or “advising” suicide; these laws are rare because of First Amendment complications.) While there is no federal legislation on the subject (the Supreme Court in Washington v. Glucksberg held only that there is no right to PAS under the federal due process clause), four states have legalized PAS: Montana, Oregon, Vermont, and Washington. The ongoing litigation in New Mexico may soon bring that number to five. Three of these four states (Oregon, Vermont and Washington) legalized PAS through legislation or referendum, while Montana and parts of New Mexico have legalized PAS through state judicial precedent (in 2008 and 2014, respectively; the New Mexico decision from last January is currently only applicable in one district). Because all legalization efforts have occurred in the last three decades, the trend to eliminate legal barriers to PAS appears to be a recent one. Oregon has the oldest PAS law on the books, from 1994, while the remaining states have all legalized PAS since 2008.

In addition to the recent trend to legalize PAS, another interesting trend is the division in support for PAS between the public and experts. Among those presumed to be experts (based on subscription to the New England Journal of Medicine), about 67 percent of those polled in the United States indicated opposition to PAS. One of the more vocal opponents of PAS is a physicians’ professional organization: the American Medical Association. The AMA takes the position that PAS is “fundamentally inconsistent with the physician’s role” and is an improper extension of the right to refuse treatment. The AMA’s published opinion has remained unchanged since 1996, suggesting it is not reflective of the current trends toward more liberal PAS laws.

Conversely, the public tends to support PAS, if termed correctly. A Gallup poll last May indicated that 70 percent of the public agreed that “when patients and their families wanted it, doctors should be allowed to ‘end the patient’s life by some painless means.'” The favorable percentage dropped to 51 percent when the question was changed to include the word “suicide,” suggesting a social connotation of the word suicide, rather than disapproval of the act itself. The public’s pro-PAS view seems to be driving the current trend to remove legal barriers to PAS.

It is clear that the hard stance against PAS has eroded in recent decades. The New Mexico state trial court decision in January announced, “[c]ertainly the medical and legal ethical considerations regarding end of life care have changed over the past fifty years. ” Last year alone, six states introduced bills to directly legalize PAS, including Connecticut, Vermont (passed), New Jersey, Kansas, Hawaii, and Massachusetts. In four other states, bills related to the issue of PAS, short of full legalization were introduced.

After the Minnesota Supreme Court ruling last week, another case on assisted suicide pending before the Minnesota Supreme Court has the public’s attention. With yet another PAS case coming before the Minnesota Supreme Court, New Mexico courts contemplating the expansion of the trial court ruling across the state, and bills becoming a frequent occurrence in other states, PAS legalization is becoming a trend to watch–in Minnesota, New Mexico, and nationally. With baby boomers nearing the age where end of life decisions become more pressing, discussions about legalizing PAS to expand end of life options will become more prevalent and more urgent.

Genetic Testing: Thorny Ethical Puzzles in Returning Results From Researchers

March 1, 2014
Biotechnology, Ethics

Savir Punia, MJLST Lead Notes and Comments Editor

The Minnesota Journal of Law, Science and Technology Symposium article, The Role of Law in the Debate over Return of Research Results and Incidental Findings: The Challenge of Developing Law for Translational Science, by Professor Susan Wolf, discusses the current issues researchers are facing with genetic testing. At present, there is a dramatic rise in genetic-based research and tissue banks seeking to discover the genetic mutations and disorders responsible for some of the worst ailments plaguing humans today. As researchers are able to gather data using increasingly sophisticated tools, researchers are finding things they are not looking for, including information that could make a big difference for a donor. According to the 2012 New York Times Article, Genes Now Tell Doctors Secrets They Can’t Utter, we are at an awkward interval where our ability to capture information is exceeding our ability to know what to do with it.

Currently, the federal government’s National Institute for Health (NIH) is funding projects, including Professor Wolf’s research project on return of results, in order to develop guidelines in this thorny subject area. Until then, researchers are operating with a heightened nervousness about when and how to disclose research results to study participants or their families. According to Professor Wolf’s symposium article, researchers are already expressing anxiety “that they must navigate between legal threat on both sides – liability for failure to return findings on one side, and liability for wrongly returning on the other.”

Given the current state, researchers are tasked with dealing with challenging situations on their own. For example, researchers studying genes unrelated to breast cancer notice members of one family have a breast cancer gene, does this obligate researchers to disclose this finding or not. Currently, a lot of this depends on the types of consent forms used in the research projects. For example, the New York Times article discusses to similar situations with very different results. In the first research project investigators discover that a family does have a breast cancer gene, but does not disclose it because the consent form stated no results would be returned, essentially tying the hands of the researchers. In another study, researchers discovered a woman who had a strong family history of breast and ovarian cancer did not carry her family’s breast cancer gene, and they decided on ethical grounds to breach their consent forms stipulations in order to inform the woman and her family. These types of situations are becoming an ever increasing problem, and with no guidance or base line rule issued by any public health organization, researchers will continue to get caught up in return of research results.

Genetic research has brought about rapid advancement and change in how we approach human health, but it also has brought about some great challenges. As important as genetic research is, the individual submitting to it must not be forgotten. As genetic researchers sequence whole genomes and discover mutations in research participants’ sequences, there will be more of an imperative to communicate those results back in order to help that participant seek preventative care. Moreover, genetics are unique in that mutations in one individual may affect that individual’s entire family. Research participants’ families have a stake in their family members’ genetic sequences, because what is discovered there could also affect their own lives. Whether to return results to family members is a much more controversial issue and includes certain traditional healthcare privacy rules. As genetics continue to grow and play an important part in our healthcare, issues such as the ones above will need to be clarified and outlined. Research in this area is occurring at a fast pace, and Professor Wolf and her colleagues will be watched closely as they work toward establishing guidelines to power genetic research into the future.

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