Harvard Law & Policy Review

Indira Sordo

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Republican Bill Would Make it Easier for Employers to Access Your Genetic Makeup

By Rep. Louise Slaughter (D-N.Y.)*

When scientists started the process of sequencing the human genome, it began to unlock limitless advancements in medicine that were and remain virtually unparalleled in our history. At the same time, a new risk arose that genetic information could be used for employment and health insurance discrimination. Every American was a potential victim; none of us were born with perfect genes.

No one should be forced to live in fear that their genetic information could be used to deny them a job, educational opportunity, or health insurance. Despite the fact that everyone has a bad gene, I’ve seen too many people discriminated against. That’s why I wrote the first genetic nondiscrimination bill in 1995. My hope was to move the legislation forward to outlaw discrimination and remove a major barrier to making progress in genetic research. Unfortunately, many of my colleagues, persuaded by self-serving arguments from the insurance industry, put up a fight and failed to give this bill the attention it deserved.

In politics and life, you’re only defeated when you give up. It took longer than I would have liked, but we finally had success after I introduced the bill for a full seven Congresses. After this fourteen-year fight, my bill, the Genetic Information Nondiscrimination Act (GINA), finally passed the House by a vote of 414-1 and the Senate unanimously in 2008, before being signed into law by President George W. Bush.

The late Senator Ted Kennedy, D-Mass., called this bill “the first civil rights act of the twenty-first century,” and Dr. Frances Collins, who is now the Director of the National Institutes of Health, said that watching it pass in Congress was a seminal moment in his career.

By prohibiting the improper and discriminatory use of genetic information, people could take advantage of the life-altering potential of genetic research without fearing that their employers could fire them and their health insurers could raise their rates based on a test result. This law has since gone on to play a leading role in much of the groundbreaking medical research being done today.

Congress reiterated its support for the fundamental importance of this law when it passed the 21st Century Cures Act late last year, which was signed into law by President Obama. The bipartisan legislation contains some of the most significant advances in research privacy protections in decades, giving those taking part in genetic testing even more safeguards to keep their data private.

Despite the long-standing, bipartisan backing for GINA and the recent widespread support for the 21st Century Cures Act, congressional Republicans are now working quickly and quietly to roll back these safeguards by passing H.R. 1313. The so-called Preserving Employee Wellness Programs Act would make it easier for employers to access their employees’ medical information and genetic testing. Worse still, this proposal would give employers access to the same information about their employees’ spouses and even their children. Any employees who decline to provide this information would face penalties that could cost them thousands of dollars a year.

These financial penalties are a way for employers to force their employees to provide sensitive medical information and would make a private health condition anything but. This Republican bill would take our nation back to the days before GINA, where employees could once again have their genetic information used against them, with their jobs and health care back on the line.

We cannot afford to turn back the clock with the Preserving Employee Wellness Programs Act and reverse the progress we’ve made under GINA. Private genetic information should remain exactly that, and not follow an employee into the workplace. If Republicans succeed in passing this bill, it would open an enormous loophole in Americans’ hard-won privacy protections and threaten the remarkable medical research progress we’ve made in recent years.

I’m gratified by the many agencies, groups, and advocates that have already weighed in against this legislation. The public must join the scientific and consumer protection community to demand that Congress protect our privacy and promising medical breakthroughs by scrapping this dangerous bill.

 

*Rep. Slaughter has served as the U.S. representative for New York’s 25th District since 1987 and is the current ranking member of the House Rules Committee. Her work on GINA previously was published in the Harvard Journal on Legislation.

Photo Credit: Andrea Laurel

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Repeal of Dodd Frank Act-Heralding a new financial crisis?

By Nicolas Deising* & Nihal Dsouza**

The Dodd Frank Act is considered to be the most ambitious and far reaching legislation regulating the financial sector since the Great Depression of the 1930’s. On the surface, it instills confidence in the financial system. At a deeper level, it is aimed at preventing similar occurrences to the 2008 financial crisis, in which millions of people lost their homes and jobs and trillions of dollars of national wealth disappeared. Despite its benefits, the Act has been criticized for being overly complex and not achieving its stated goals. Most recently moves, both through an executive order and legislative action in the Senate, have been made to reduce the Act’s efficacy and subsequently clear the path for its repeal. These decisions of the new Administration are in line with their policy of minimum governmental regulation.

These measures, however, may prove to be short-sighted as they underestimate the importance of the legislation. The Dodd Frank Act has made the financial system more secure by providing significant tools to ensure stability and consumer protection. It ensured that systematically important banks did not indulge in inherently risky activities such as proprietary trading. By doing so, systemic risk is precluded wherein failing big banks would not be able to pull down smaller ones.

In order to prevent the occurrence of a new crisis, Dodd Frank introduced a new regulatory regime with strict obligations and prohibitions for financial institutions on the one hand and a plethora of provisions for consumer protection on the other. Dodd Frank puts in place a regulatory framework to reduce risks to the financial markets. The Act has numerous sections ensuring that the responsible authorities have the necessary discretionary powers for effective implementation and enforcement. The Securities Exchange Commission (SEC), the Commodities Futures Trading Commission (CFTC), the Board of Governors of the Federal Reserve System and finally the Consumer Financial Protection Bureau (CFPB) are essentially responsible for ensuring implementation of the Act.

The CFPB, established by Dodd Frank serves the vital function of preventing predatory mortgage lending, which was one of the major factors that led to a bubble on the housing markets. Thus, it acts as an independent financial regulator. Furthermore, the Act also created an interagency group, the Financial Stability Oversight Council (FSOC), which is endowed with the authority for monitoring risks to the financial system. Its purpose is identifying risks and responding to them and promoting market discipline. The FSOC consists of representatives from federal and state regulators as well as independent insurance experts. A central component of the Act is the “Volcker Rule” in Title VI, which prohibits speculative activities for commercial banks. In particular, the Volcker Rule doesn’t allow banks to invest in hedge funds or private equity firms. The Act in Title VII also addresses the reduction of risks inherent to derivatives trading. Over-the-counter (OTC) credit derivatives spread and increased the risks posed by asset-backed securities (ABS) and collateralized debt obligations (CDO) during the crisis. Therefore, the Act mandates higher transparency standards and liquidity requirements for financial institutions. To decrease systemic risk, the Act also requires clearing over a central counterparty that sits between the buyer and the seller and guarantees the performance of contracts. Additionally, Dodd Frank mandates exchange trading for several swaps. Exchange trading, in contrast to over-the-counter trading is standardized, transparent, and regulated and consequently safer. Furthermore, the Act imposes higher capital requirements on financial institutions and thereby decreases their leverage. The council has to make recommendations to the Federal Reserve to establish standards for risk based capital, leverage, liquidity, and contingent capital. Another major achievement of the Act is the regulation of credit rating agencies like Moody´s and Standard and Poor’s by creating an Office of Credit Ratings at the SEC.

The Dodd Frank Act has been the subject of numerous criticisms. It has been argued that the Act increases the compliance costs for financial institutions without giving any substantial benefits to the public. Critics also argue that the Act unduly burdens small banks by subjecting them to the same rigorous standards as larger banks, and that this is bad for the economy. Moreover, some scholars have raised arguments against the consumer protection provisions, on grounds that the added cost and complexity makes it more profitable for creditors to concentrate their lending only on well-to-do borrowers, thereby making it harder for middle-class borrowers to access credit. Furthermore, it is contended that increased regulation is inherently bad for consumers because banks would ultimately pass on the added cost of implementation to them. There are also worries that the Act is overly complex, and that too much regulation itself affects financial stability. In addition, it is argued that excessive regulation and the absence of a level playing field puts U.S. institutions in more difficult position then their European counterparts, leading to regulatory arbitrage.

Most of these criticisms can be addressed and do not justify an outright repeal of the Act. The threat of regulatory arbitrage, for instance, is greatly reduced by the uniformity in the approach taken by the G20, and in any case with the Basel III standards implemented and transposed universally there will be little chance of regulatory arbitrage. Furthermore, it is better for consumers to pay a little more for financial services rather than face the prospect of another banking crisis. It is also important not to forget that the Act provides legislation in important areas that were hitherto unregulated; for instance, it regulates shadow banks and the non-bank financial institutions (NBFI), which were previously contributors to the crisis. It prevents predatory lending and the so-called Ninja Mortgages. Although there is merit in some of the criticisms notably regarding the negative impact on smaller or community banks, the safer way forward, which would be acceptable to both sides of the political spectrum, would be to amend the Act and not try for an outright repeal. A possible solution would be to reduce the burden on smaller banks by ensuring that the strictest requirements are only for the systemically important financial institutions (SIFIs) and not the smaller institutions.

With the passing of almost a decade since the financial crisis, it appears as if lawmakers have gotten lax and forgotten the catastrophic effects which came in its wake and the lack of regulation which led to it, which made some of the most significant financial institutions collapse. Dodd Frank was intended to ensure that SIFI’s would not fail, and this goal remains as relevant today as it was pre-financial crisis. The Act contributes enormously to the progress made in recent years in ensuring a more resilient banking system that can limit the outfall of any potential future crisis. Its repeal would make many bankers happy but would in effect ‘pull the rug out from under’ the global financial system.

* Nicolas Deising is a Research Assistant at the University of Bonn and a PhD Student.

** Nihal Dsouza is a Research Assistant at the University of Bonn and a PhD Student at the International Max Planck Research School for Successful Dispute Resolution (IMPRS-SDR).

Photo Credit: Nakashi

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Repealing the ACA Would be a Step Backwards in Treatment of HIV

By Mark Satta*

“It was a holocaust…All of my peers died of AIDS, and I have no one to celebrate my past or my journey, or to help me pass down stories to the next generation. We lost an entire generation of storytellers with HIV.” Those are the words of David Mixner, a civil rights activist and author, who lived through the horror of the AIDS crisis in the 1980s and early 1990s in the United States—a time in which a diagnosis of HIV was, for most, a death sentence, and in which the treatment options for HIV/AIDS were extremely limited.

In the intervening years, medical advances have revolutionized the prospects for those diagnosed with HIV. It is no longer a death sentence. With the proper medical treatment, most people with HIV can live long and healthy lives. Furthermore, recent studies have shown that proper medical treatment can greatly reduce (and perhaps completely eliminate) one’s risk of transmitting HIV to others. We now have the medical tools needed to prevent new HIV infections and to help those currently infected with HIV lead healthy, flourishing lives.

But proper treatment for HIV is expensive and cost barriers have hampered progress in containing the virus and taking care of those living with HIV now.

The Affordable Care Act (ACA), passed under the Obama Administration, removed substantial cost barriers to treatment for many HIV positive people through measures such as the expansion of Medicaid and the banning of preexisting condition exclusions. A study from the Kaiser Foundation found that these measures resulted in a significant increase in the percentage of HIV positive people living in the United States who have the health insurance they need to afford treatment.

Provisions in the American Health Care Act (ACHA)—i.e. the GOP’s proposed ACA replacement—would shrink Medicaid funding and coverage and would allow insurance companies to deny health insurance to those with gaps of more than 63 days in their health insurance coverage. These changes run the risk of undoing much of the progress that has been made under the ACA to provide affordable health insurance and treatment for those with HIV. Even though this particular bill faced difficulties in the House of Representatives, most of the evidence suggests that any healthcare alternative proposed by the GOP is apt to contain similar provisions.

Recent new isn’t all bad for those fighting for HIV treatment and prevention. The Trump administration’s budget retains funding for valuable organizations used to fund HIV treatment like the Ryan White HIV/AIDS Program, which financially assists those with HIV who can’t afford treatment, and the President’s Emergency Plans for AIDS Relief (PEPFAR), which provides relief for those with HIV and AIDS globally.

But while these funds are not being cut, unless they are expanded, repealing the ACA will result in a larger group of people needing to share these limited resources. Thus, without compensating measures, repealing the ACA would constitute a step backwards in our ability to provide medical care for HIV positive people and in addressing the impact of HIV.

We should acknowledge the significant benefits that continued funding of programs like Ryan White will allow for, but we should also recognize both the imprudence and callousness of taking a step backwards in the treatment of HIV/AIDS, when instead we should be continuing to take steps forward.

We have the medical resources to keep HIV positive people healthy and to stop the spread of the disease, yet in 2014 there were over 6,700 deaths attributed directly to HIV and in 2015 there were still almost 40,000 newly diagnosed cases of HIV in the United States. And the burden continues to fall disproportionately on minorities like African Americans, Latinos, and gay and bisexual men.

The limits of our action contribute to the death and suffering of thousands of Americans living with HIV every year, to the prolongation of an unnecessary risk to thousands more, and to an increased burden on society generally as we expend resources on emergency and end of life care that could have been spent instead on preventative measures and earlier treatment.

In the 1980s, we lacked the knowledge and medical treatment needed to prevent the death of a generation of Mixner’s storytellers. But with groundbreaking advances in the medical field, the responsibility for the storytellers we lose in this generation lies with us. That potential loss is just one of many examples of the very real consequences that repealing the ACA will have on chronically ill Americans. And it is up to all of us to fight together to protect the interests of those in need of care.

*Mark is a 1L at HLS and an Online Editor for HLPR.

Photo Credit: Ted Eytan

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The Moral Foundations of the Insurance Mandate

By Tina Rulli*

Republicans’ new plan to replace the Affordable Care Act ditches the health insurance mandate, the requirement for individuals to purchase health insurance or pay a penalty. Instead, their American Health Care Act favors tax credits to incentivize people to purchase insurance.

There are many vantage points from which to assess the health insurance law, including legal, economic, and public health perspectives. My focus is on the moral foundations of the individual mandate, in part, because Republicans have taken moral umbrage at it as an instance of government overreach inconsistent with respect for individual liberty. Moral concerns should and do motivate public policy.

What Republicans fail to see is the moral logic behind the insurance mandate. We have a moral obligation to purchase health insurance because our hospitals and clinicians have a legal duty to provide emergency and acute care to people regardless of ability to pay based on the Emergency Medical Treatment and Labor Act (EMTALA). In 2013, the cost of uncompensated care was a whopping $84.9 billion.

When others have a duty to rescue, a duty to provide aid to those in serious need, individuals can incur obligations to lower the potential costs of rescue. This is a familiar duty: knowing that park services will provide costly tax-payer funded rescue if a mountaineer gets lost, mountaineers have an obligation to mitigate the risks they take by staying on well-traveled paths and out of avalanche areas and by carrying a GPS that makes them easily locatable. In 2011, when an 8.9 magnitude earthquake hit Japan, California surfers were warned to stay out of the path of the resulting tsunami. This was not just out of concern for their wellbeing, but also for the safety of their potential rescuers. When others have a duty to aid, we can incur obligations to mitigate the burden of rescue to them and others.

One might argue that we should drop the provision of free emergency and acute health care. But truly imagine what this would entail. Clinicians would be required to stand back while a car accident victim without health insurance bleeds to death, even though they could administer a simple life-saving blood transfusion. This is inconceivable in a compassionate and minimally decent society. We do not think that one owes one’s life for lack of insurance, whether due to personal negligence or financial hardship. Further, requiring clinicians to deny care would be a great burden to them. Compassionate clinicians, out of their own sense of decency and their allegiance to an ethical code that requires promotion of patient welfare, could not stand back and watch a person needlessly suffer or die.

Perhaps the stalwart moral libertarian would say: “You cannot mandate that I buy insurance, given that I am willing to refuse your free emergency care.” But $84.9 billion dollars in uncompensated costs suggests that such consistent moral libertarians are mythical beasts. People who fail to buy health insurance overwhelmingly accept free emergency and acute care in their time of need.

In short, there is a moral justification for the insurance mandate that the Republican plan overlooks. The moral foundation is an important component in rationalizing good policy to the public. Tax incentives send the wrong message: treating the purchase of health insurance as optional, rather than as a duty of reciprocity for a compassionate health care system that will not allow the most vulnerable to suffer or die for lack of insurance. Surely, conservatives can agree to holding people responsible for participating in a cooperative system whereby some people incur burdens in order to benefit others. This is the paradigm of individual responsibility. It was their idea in the first place.

For related reading, see here and here.

*Tina Rulli is an Assistant Professor in the Philosophy Department at the University of California, Davis.