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The article explores polygenic scores and recommendations for healthcare entities and business enterprises in using polygenic scores (PGS). Topics discussed include the potential uses of PGS, the failure of the U.S. Health Insurance Portability and Accountability and the Genetic Information Nondiscrimination Act to address the negative effects of PGS misuse, and ways to secure PGS and prevent its misuse.

In recent decades, special attention has been given to the privacy and discrimination risks associated with genetic information. Federal, state, and international laws all contain specific protections for the use of genetic information in a variety of contexts, including insurance and employment. Yet the very considerations motivating special protections for genetic information extend beyond mere genetics. Epigenetics involves the study of heritable changes in gene function that do not involve changes in the DNA sequence. Epigenetic data shares a number of normative similarities and policy concerns with genetic data, and in some ways, presents an even greater privacy and nondiscrimination risk than genetic data. However, epigenetic information remains unprotected by existing genetic privacy and nondiscrimination laws, which are based on an outdated conception of health and disease, focused narrowly on genes and genetic information. This Note argues that epigenetic information warrants the same protections as genetic information and calls for an amendment of existing genetic privacy and nondiscrimination laws to broaden the definitions of the data at stake to encompass epigenetic and other postgenomic information. [ABSTRACT FROM AUTHOR]

The Genetic Information Nondiscrimination Act of 2008 (GINA) represents a significant legislative step in protecting U.S. citizens from genetic discrimination in health insurance and employment. However, despite its broad preventive measures, GINA has limitations in scope and enforcement. Notably, it does not extend protections to life insurance, disability, and long-term care insurance, leaving U.S. citizens susceptible to genetic discrimination. State-level legislative efforts have tried to reconcile these vulnerabilities. Many state-level legislative efforts vary in effectiveness, with some states like Florida and Illinois enacting more robust laws. The future of genetic information protection requires an amendment to GINA or new federal legislation, drawing from successful state models to ensure adequate protections. This paper advocates for such national legislation, highlighting the minimal impact on the life insurance market and the importance of safeguarding genetic privacy to foster trust in genetic testing and scientific progress. [ABSTRACT FROM AUTHOR]

The Genetic Information Nondiscrimination Act (GINA) was enacted to prevent discrimination based on an employee's genetic information. Although GINA undoubtedly provides employees protection from unjust genetic discrimination by employers, varying interpretations of what constitutes "genetic information" has raised legal uncertainties in how GINA is applied. Consequently, the genetic information of an employee's family may be unduly placed at risk as a result of misinterpreting the statutory language and legislative intent of GINA. It is of the utmost importance that the definition of "genetic information" be construed with respect to the Act's legislative history, which supports a broad interpretation and application of the term "genetic information." By improperly narrowing the scope of what constitutes "genetic information," the genetic privacy of an employee's family is unnecessarily jeopardized. Furthermore, employers are offered a safe harbor when committing discriminatory acts based on genetic information that are difficult, if not impossible, to prove. [ABSTRACT FROM AUTHOR]

Since the human genome was first sequenced in 2003, millions of consumers and medical professionals have swarmed the field of medical genetics, seeking to peer into the crystal ball and see what their own, or their patients', futures may hold. Also rushing in are direct-toconsumer genetic testing companies like 23andMe and AncestryDNA, which can circumvent medical privacy laws by offering genetic testing without a medical provider. Medical privacy regulations, such as the Health Information Portability and Accountability Act of 1996 (HIPAA), the Genetic Information Discrimination Act of 2008 (GINA), and those promulgated by the Federal Trade Commission, do not regulate these companies adequately for a litany of reasons. These loopholes and shortcomings in regulation leave American consumers substantially less protected, less medically informed, and in some instances can jeopardize national security. This Note proposes that Congress should enact legislation overhauling the current regulatory regime in at least three ways: (1) the "covered entity" approach should be abandoned and replaced with a data-driven model; (2) the Safe Harbor provision of HIPAA should explicitly exclude genomic data; and (3) consumers should be given a "right to be forgotten" and compel companies to delete their data. These reforms would significantly strengthen consumers' genetic privacy and give them an escape hatch to safeguard the core of their identity. [ABSTRACT FROM AUTHOR]

Genetic information is still underestimated in conservation policies, seldom being monitored or included in management strategies. Monitoring changes in genetic diversity over time in endangered species is useful to anticipate possible risks associated with reduced genetic variation. The Araripe Manakin (Antilophia bokermanni) is a Critically Endangered species, probably with a historically low level of genetic diversity and currently facing demographic population decline. This is the first study to present a fine-scale spatio-temporal genetic monitoring for the Araripe Manakin. Using microsatellite loci, genotyped at two time periods (2003-2004 and 2015-2017), we conclude that genetic diversity has been relatively stable in this short-term assessment, with limited signs of population structure between time frames, and no current population structure within past or present species distribution. However, we also detect signs of genetic bottleneck and evidence that suggest that mating is not presently random. Our results corroborate that the species is a resilient bird, but habitat loss and degradation are jeopardizing Araripe Manakin's persistence. The species comprises a unique small population, and restoration of habitat quality and connectivity should continue to maintain its viability. Nonetheless, given the low genetic diversity observed, we further identify some challenges and recommend solutions for the implementation of genetic information in the current conservation effort of the Araripe Manakin. [ABSTRACT FROM AUTHOR]

The article offers information on the Genetic Information Nondiscrimination Act of 2008 (GINA) and analyze how federal genetic antidiscrimination case law yields different definitions of genetic information. It mentions reform proposals to create a sensible approach to prohibiting genetic discrimination in life insurance. It also mentions life insurance companies should be prohibited from requiring specific genetic testing in an application and the disclosure process.

The Genetic Non-Discrimination Act (GNDA), passed by Parliament in 2017, seeks to protect Canadians' genetic information. The GNDA establishes certain criminal prohibitions to the use of genetic information and also amends federal employment and human rights legislation to protect against genetic discrimination. However, we argue that the GNDA alone is insufficient to protect Canadians given constitutional limitations on the powers of the federal government. Areas of profound importance relating to genetic discrimination are governed by the provinces and territories. We identify three key areas of provincial/territorial jurisdiction relevant to protection against genetic discrimination and outline the applicable legislative environments. We identify problems with the status quo and set out the gaps and limitations of relying solely on the GNDA. We conclude that provinces and territories need to amend their human rights, employment, and insurance legislation to ensure comprehensive protection of Canadians' genetic information. [ABSTRACT FROM AUTHOR]

The growing availability of genetic testing in the clinical, research, and direct-to-consumer realms has caused people to fear that they will be discriminated against for their genes. In response, Congress passed the Genetic Information Nondiscrimination Act (GINA), which prohibits the use of genetic information in much of health insurance and employment. Importantly, this prohibition does not apply to life, long-term care, and disability insurance. While these lines of insurance are not federally prohibited from using an individual's genetic information, several states do regulate use of genetic information in these insurance lines. This paper presents a comprehensive 50-state survey on regulation of how life, long-term care, and disability insurers can use genetic information. Overall, it shows that the use of genetic information in these lines of insurance is still relatively unregulated and that the divergent strategies adopted across states are both weak and problematic. Consistent and even regulation, whether from the federal government or through model legislation, is needed to adequately protect insurers and families alike. [ABSTRACT FROM AUTHOR]

The article examines the discrimination and privacy concerns at the intersection of healthcare and big data. It mentions use of data analytics in the healthcare sector and legislations such as the Genetic Information Nondisclosure Act (GINA), the Health Information Portability and Accountability Act (HIPAA), and the Health Information Technology for Economic and Clinical Health Act (HITECH). It also mentions complex framework of the data industry, its relation to health insurers.

At one time, specialized health privacy laws represented the bulk of the rules regulating genetic privacy, Today, however, as both the field of genomics and the content of privacy law change rapidly, a new generation of general-purpose privacy laws may impose new restrictions on collection, storage, and disclosure of genetic data. This article surveys these laws and considers implications. [ABSTRACT FROM AUTHOR]

Researchers now commonly collect biospecimens for genomic analysis together with information from mobile devices and electronic health records. This rich combination of data creates new opportunities for understanding and addressing important health issues, but also intensifies challenges to privacy and confidentiality. Here, we elucidate the "web" of legal protections for precision medicine research by integrating findings from qualitative interviews with structured legal research and applying them to realistic research scenarios involving various privacy threats. [ABSTRACT FROM AUTHOR]

Genetic testing is becoming more widespread, and its capabilities and predictive power are growing. In this paper, we evaluate the ethical justifications for and strength of the US legal framework that aims to protect patients, research participants, and consumers from genetic discrimination in employment and health insurance settings in the context of advancing genetic technology. The Genetic Information Nondiscrimination Act (GINA) and other laws prohibit genetic and other health-related discrimination in the United States, but these laws have significant limitations, and some provisions are under threat. If accuracy and predictive power increase, specific instances of use of genetic information by employers may indeed become ethically justifiable; however, any changes to laws would need to be adopted cautiously, if at all, given that people have consented to genetic testing with the expectation that there would be no genetic discrimination in employment or health insurance settings. However, if our society values access to healthcare for both the healthy and the sick, we should uphold strict and broad prohibitions against genetic and health-related discrimination in the context of health insurance, including employer-based health insurance. This is an extremely important but often overlooked consideration in the current US debate on healthcare. [ABSTRACT FROM AUTHOR]

The article discusses issues on the privacy of genetic data, particularly the possible discriminatory effects of genetic data collection and the laws to avoid them like the Genetic Information Nondiscrimination Act (GINA). Topics include the concept of genetic information, the benefits of genetic information testing services, and the risks involved in the collection of genetic data in professional sports and public schools in the U.S.

The genomic testing industry is an edifice built on data transparency: transparent and often unconsented sharing of our genetic information with researchers to fuel scientific discovery, transparent sharing of our test results to help regulators infer whether the tests are safe and effective, and transparent sharing of our health information to help treat other patients on the premise that we gain reciprocity of advantage when each person's health care is informed by the best available data about all of us. Transparency undeniably confers many social benefits but creates risks to the civil rights of the people whose genetic information is shared. Touted as a major civil rights law at the time of its passage, the Genetic Information Nondiscrimination Act of 2008 (GINA) has endured ten years of criticism that its protections are ineffectual, insufficient, or even unethical and overtly unsafe for the people it aims to protect. At the center of this controversy are provisions of GINA that expand people's access to genetic information that others store about them--a heavily contested assertion that data transparency implies sharing data not ju st with third parties, but with the people whose data are being shared. This Article traces the decades-long roots of this assertion and explores pathways to resolve the controversy that engulfs it. It is important to resolve this controversy. As GINA enters its second decade, genomics is finally starting to gain sufficient predictive power to support discriminatory and other nefarious uses that GINA was designed to prevent. We are entering a positive feedback loop in which the genomic research that exposes us to risk of unwanted data disclosures simultaneously fuels discoveries that make such disclosures potentially more damaging. [ABSTRACT FROM AUTHOR]

Over the course of 2018, a number of suspects in unsolved crimes have been identified through the use of GEDMatch, a public online genetic database. Law enforcement's use of GEDMatch to identify suspects in cold cases likely does not constitute a search under the Fourth Amendment because the genetic information hosted on the website is publicly available. Transparency reports from direct-to-consumer (DTC) genetic testing providers like 23andMe and Ancestry suggest that federal and state officials may now be requesting access to private genetic databases as well. Whether law enforcement's use of private DTC genetic databases to search for familial relatives of a suspect's genetic profile constitutes a search within the meaning of the Fourth Amendment is far less clear. A strict application of the third-party doctrine suggests that individuals have no expectation of privacy in genetic information that they voluntarily disclose to third parties, including DTC providers. This Note, however, contends that the U.S. Supreme Court's recent decision in Carpenter v. United States overwhelmingly supports the proposition that genetic information disclosed to third-party DTC providers is subject to Fourth Amendment protection. Approximately fifteen million individuals in the United States have already submitted their genetic information to DTC providers. The genetic information held by these providers can reveal a host of highly intimate details about consumers' medical conditions, behavioral traits, genetic health risks, ethnic background, and familial relationships. Allowing law enforcement warrantless access to investigate third-party DTC genetic databases circumvents their consumers' reasonable expectations of privacy by exposing this sensitive genetic information to law enforcement without any meaningful oversight. Furthermore, individuals likely reasonably expect that they retain ownership over their uniquely personal genetic information despite their disclosure of that information to a thirdparty provider. This Note therefore asserts that the third-party doctrine does not permit law enforcement to conduct warrantless searches for suspects on private DTC genetics databases under the Fourth Amendment. [ABSTRACT FROM AUTHOR]

Drawing on a landscape analysis of existing data-sharing initiatives, in-depth interviews with expert stakeholders, and public deliberations with community advisory panels across the U.S., we describe features of the evolving medical information commons (MIC). We identify participant-centricity and trustworthiness as the most important features of an MIC and discuss the implications for those seeking to create a sustainable, useful, and widely available collection of linked resources for research and other purposes. [ABSTRACT FROM AUTHOR]

The article discusses what the author refers to as the potential impact that human genetic prediction will have on America's insurance markets, and it mentions coverage for preexisting conditions under the U.S. Patient Protection and Affordable Care Act, as well as DNA analyses. Artificial intelligence (AI)-informed insurance pricing and an individual's polygenic score (PGS) are examined, along with body mass index and America's Genetic Information NonDiscrimination Act.

DeCODE Genetics, Inc., a pioneering Icelandic biotech firm, recently introduced a free website that permits Icelanders to learn whether they carry mutations in the BRCA2 gene that are known to increase cancer risk, even if these citizens have never participated in genetic testing. Approximately five thousand Icelanders have elected thus far to receive their status. This site is made possible by the consanguinity o f Icelandic citizens, who number fewer than 350,000, and their detailed genealogical records dating back centuries, a set of circumstances that presents a unique opportunity to study genetic mutations and the medical disorders associated with them. Using such information, deCODE has the ability to impute genetic information about individuals without any legal requirement to obtain their informed consent. This ability to impute individuals ' genotypes without having gathered bio-specimens or medical information directly from them calls into question researchers ' duty to inform individuals about their health risks, and the individuals' right not to know ( "RNTK"), defined as the idea that people ought to be able to control their receipt of genetic information about themselves. The emergence of unanticipated and yet highly significant genetic findings is referred to as the "incidentalome." Commentators use the phrase "incidental findings '' ( "IFs") to refer to medically important information that arises from research but is unrelated to the goals of that research. This article analyzes the return by researchers of genetic IFs to individuals whose genotypic data has been imputed, and who therefore have not indicated their consent to receive such information. While Iceland is at the forefront of this issue due to its small, homogeneous population, other nations increasingly encounter the same need to balance individual autonomy with responsibility for public health. Part II of this Article will consider the global rise of biobanks and the concomitant challenges posed to the right not to know. Part III considers how the incidentalome arises in Iceland, a country renowned for its genomic research, while Part IV examines the current debate in Iceland regarding the release of imputed genomic information to its citizens. International laws and norms regarding the RNTK are the subject of Part V. Part VI of this Article explores the legal and ethical arguments surrounding the three possible approaches considered in Iceland for the release of imputed BRCA2 genetic data: no return of the data; make it publicly known that the information is available and thus enable individuals to take the initiative to request that information for themselves; or contact the affected individuals directly to inform them that researchers possess information relevant to their health. Because similar legal and ethical questions arise when health care providers consider their duty to inform individuals exposed to HIV and AIDS, Part VII analyzes considerations surrounding the provision of this risk information. Finally, Part VIII of this Article proposes an approach for the future, emphasizing the need for a robust public service campaign that encourages individuals to access their imputed genetic data and, more broadly, for expanded governmental investment in and public access to genetic testing. [ABSTRACT FROM AUTHOR]

The identification and arrest of the Golden State Killer using DNA uploaded to an ancestry database occurred shortly before recruitment for the National Institutes of Health's (NIH) All of Us Study commenced, with a goal of enrolling and collecting DNA, health, and lifestyle information from one million Americans. It also highlighted the need to ensure prospective research participants that their confidentiality will be protected and their materials used appropriately. But there are questions about how well current law protects against these privacy risks. This article is the first to consider comprehensively and simultaneously all the federal and state laws offering protections to participants in genomic research. The literature typically focuses on the federal laws in isolation, questioning the strengths of federal legal protections for genomic research participants provided in the Common Rule, the HIPAA Privacy Rule, or the Genetic Information Nondiscrimination Act. Nevertheless, we found significant numbers and surprising variety among state laws that provide greater protections than federal laws, often filling in federal gaps by broadening the applicability of privacy or nondiscrimination standards or by providing important remedies for individuals harmed by breaches. Identifying and explaining the protections these laws provide is significant both to allow prospective participants to accurately weigh the risks of enrolling in these studies and as models for how federal legal protections could be expanded to fill known gaps. [ABSTRACT FROM AUTHOR]

Threats to privacy abound in modern society, but individuals currently enjoy little meaningful legal protection for their privacy interests. We argue that the Genetic Information Nondiscrimination Act (GINA) offers a blueprint for preventing employers from breaching employee privacy. GINA has faced significant criticism since its enactment in 2008: commentators have dismissed the law as ill-conceived, unnecessary, and ineffective. While we concede that GINA may have failed to alleviate anxieties about medical genetic testing, we assert that it has unappreciated value as an employee-privacy statute. In the era of big data, protections for employee privacy are more pressing than protections against genetic discrimination. Instead of failed legislation, GINA could represent the future of employment law. [ABSTRACT FROM AUTHOR]

Workplace wellness programs have proliferated in recent years, thanks to a convergence of forces: the Affordable Care Act, steeply rising medical costs, and high rates of obesity and chronic illness. While aiming to lower healthcare costs and increase employee productivity, these initiatives raise troubling privacy concerns, specifically in the area of genetic privacy. This Note argues that incentivizing the disclosure of genetic information in wellness programs' baseline health questionnaires both genetic test results and family medical history-runs afoul of the Genetic Information Nondiscrimination Act (GINA). The Equal Employment Opportunity Commission issued a final rule in 2016 that permitted incentivizing disclosure of a spouse's genetic information with a health insurance discount of up to thirty percent of the individual's cost of coverage. However, in December 2017, a federal judge vacated it because the agency failed to provide reasoned explanation for the rule. Now that the EEOC is back to the drawing board and employers are waiting for guidance, this Note urges the agency to adopt a rule clarifying that GINA's "voluntary" wellness program exception prohibits incentivizing disclosure of GINA-protected information with health insurance discounts at any level. Part I provides background on GINA, wellness programs, and these programs' regulation. Part II explains why financial incentives for disclosing genetic information amounts to coercion and renders such a practice involuntary. Part III proposes that a zero-incentive rule would further GINA s purpose, present opportunities for more successful wellness program outcomes, and offer certainty to employers looking for legal clarity in this area. [ABSTRACT FROM AUTHOR]

Ten years ago, the Genetic Information Nondiscrimination Act ('GINA') came into law. While it was unclear how prevalent genetic discrimination was, GINA was enacted preemptively to prevent discrimination in insurance and employment. It also created uniform protections to remedy a confusing patchwork of state and federal protections. Finally, Congress hoped GINA would allay public fears of genetic discrimination that discouraged people from undergoing genetic testing and participating in genetics research. To address those fears, Congress enacted robust protections against genetic discrimination in health insurance and employment, in part, by defining 'genetic information' as broadly as possible. Over the last ten years, however, the courts have been battling over the meaning of 'genetic information'. One interpretive approach adheres strictly to GINA's statutory language; the second interprets the definition restrictively and contrary to the plain meaning of GINA and its underlying goals. While this interpretive conflict demonstrates the difficulty of distinguishing genetic information from non-medical information, this article argues for the broader interpretation. Such an interpretation reflects Congress's choice among imperfect definitional options and it furthers the goal of creating strong protections in health insurance and employment. Finally, definitional consistency is necessary to achieve uniform protections against genetic discrimination. [ABSTRACT FROM AUTHOR]

The Genetic Information Nondiscrimination Act of 2008 (GINA) deviated from preceding employment discrimination laws by excluding disparate impact liability, an important enforcement component to promote substantive equality. Nevertheless, Congress did not intend for this to be a permanent exclusion and, instead, assigned itself future work: after six years, a commission was to educate Congress on genetic discrimination incidents, update Congress on relevant scientific advances in genetics/omics, and provide recommendations to Congress on the need to enable disparate impact liability. Ten years after GINA became law, it seems appropriate to take a look back at the broader employment law context within which Congress made this decision to exclude disparate impact liability for genetic discrimination, explore how and why Section 208 became inserted into GINA, and provide a status update on the additional policy work mandated. After reasonable investigation, there is no information to indicate that Congress fulfilled its statutory obligation to appoint members to a Genetic Nondiscrimination Study Commission or that any policy work envisioned by Section 208 has commenced. To fulfill a promise of fairness and equality, Congress must revisit the issue and enable disparate impact liability to value genetic diversity and prevent any 'genetic underclasses' from forming. [ABSTRACT FROM AUTHOR]

The article presents scenes which depict the legacy of Karen Rothenberg, founder of the Law & Health Care Program at the University of Maryland Francis King Carey School of Law in Baltimore, Maryland, in the area of mentorship. Topics discussed include transition of focus from employment discrimination to health law based on the Genetic Information Nondiscrimination Act, accomplishments in the field of genetics and the law, and her contributions to the school's health law program.

By examining advertisements, technological design, workplace wellness programs, and legal discourses involving Fitbit activity trackers, this article examines how cultural ideas about disability infuse the representation, use, study, and implementation of wearable technology. Although Fitbit features wheelchair users prominently in advertising, Fitbit only measures movements in steps, and its use in workplace wellness programs has been accompanied by legal concerns about wellness programs' potential weakening of workplace protections afforded to US workers by the Americans with Disabilities Act (ADA) and the Genetic Information Nondiscrimination Act (GINA). This article shows that inspirational and tragic representations of disability work to depoliticize wearable technology and argues that disability needs to be a more central category of analysis for cultural studies and sociological studies of the cultural impacts of fitness tracking and wellness culture. [ABSTRACT FROM AUTHOR]

The article focuses on the laws governing direct-to-consumer genetic testing in the U.S. It informs that by the way of contractual agreement with testing companies consumers have to share their insurance coverage, and the confidentiality of their information with companies. It also mentions about the enactment of Genetic Information Nondiscrimination Act and Affordable Care Act of 2010 for maintaining public health.

The article discusses U.S. state laws and legislation concerning possible discrimination against individuals with Alzheimer's disease biomarkers who are seeking long-term care (LTC) insurance services, in addition to the relationship between LTC services, Alzheimer's disease, and long-term health insurance. It also discusses the U.S. legislation the Genetic Information Nondiscrimination Act (GINA) of 2008.

The article discusess the way in which wearable technology might make a workplace safer by monitoring employees health in the U.S. Topics discussed include health privacy laws of the country; employees' health conditions revealed by the technology as prohibited by the Americans with Disabilities Act, and the Genetic Information Nondiscrimination Act; and relationship between health and privacy.

Background: Asthma control is suboptimal in Vietnam. Lack of knowledge of primary care physicians (PCPs) for asthma management may potentially be one of the causes. Purpose: The aim of this study was to assess the knowledge and practice of PCPs' asthma management based on the Global Initiative for Asthma (GINA) guidelines (2015 update). Methods: A cross-sectional study with convenience sampling was conducted among PCPs in an urban and rural area of Vietnam using questionnaires related to asthma patients daily practice: use of spirometry and the asthma control test (ACT), prescription of asthma medications, and frequency of consultations. Five asthma case scenarios were also used to ask participants to classify GINA-defined levels of asthma control and to choose the initial or adjusted treatment options based on the current situation. All scenarios are common in Vietnam, ie, three cases for adults, one case for children, and one case for pregnant women. Results: Of the 327 completed questionnaires, 201 questionnaires could be analyzed. Most PCPs consulted their asthma patients on a weekly to monthly basis. Approximately 50% used spirometry for asthma care and only 25% used ACT. For asthma treatment, oral short-acting beta agonists and oral steroids were still commonly used and long-acting beta agonists alone were prescribed by 70%. Regarding GINA-defined levels of asthma control, 24% of the responders had ≥50% of correct answers, 21% had no correct answers, 2% had all five correct answers, and 20-42% had a correct answer for each of the five questions. Regarding treatment choice, 22% had ≥50% of correct answers, 14% had a wrong answer for all nine questions, and no respondent had a correct answer for ≥8 questions. Conclusion: The percentage of PCPs in Vietnam who had implemented GINA 2015 was low. Some drugs with a high risk of side effects were still being prescribed. There is a need to improve both knowledge and daily practice. Additional studies should determine why these guidelines are not largely adopted by PCPs in Vietnam. [ABSTRACT FROM AUTHOR]

With rapid scientific and technological advances, a new genetic era is emerging. However, these advances raise ethical and legal issues, particularly genetic discrimination, that may threaten advancing science in the absence of appropriate regulation. There is currently no concrete legislative position in this area at EU level, but rather a patchwork of diverging legislative approaches amongst Member States. Genetic discrimination has been singled out as an area of reform in Europe as evidenced, for example in EU Charter of Fundamental Rights, Article 21.1 prohibiting discrimination based on ‘genetic features.’ The United Nations Convention on the Rights of Persons with Disabilities also informs this debate and may spur legislative action. From a transatlantic perspective, the United States’ federal legislation (Genetic Information Non Discrimination Act) is noteworthy. Considering scientific and technological developments, the rights at stake and the various regulatory benchmarks, this paper explores the regulation of genetic information in the EU. [ABSTRACT FROM AUTHOR]

The article discusses several developments involving the legal aspects of compelled disclosures of health records, a right to privacy, and access to health information in America as of 2017. The U.S. Genetic Information Nondiscrimination Act of 2008 is addressed, along with America's Health Insurance Portability and Accountability Act of 1996 (HIPAA) and the nation's Health Information Technology for Economic and Clinical Health (HITECH) Act.

This Article follows the path of a hypothetical college football player with aspirations to play in the National Football League, explaining from a legal and ethical perspective the health and performance evaluations he will likely face throughout his career. Some of these evaluations are commonplace and familiar, while others are more futuristic--and potentially of unproven value. How much information about themselves should aspiring and current professional players be expected to provide in the employment context? What are the current legal standards for employers collecting and acting on an individual's health- and performancerelated information? Drawing on disability law, privacy law, and the law governing genetic testing, this Article seeks to answer those questions, as well as to provide recommendations to better protect the health and privacy of professional football players. The upshot of our analysis is that it appears that some of the existing evaluations of players, both at the NFL Scouting Combine (Combine) and once drafted and playing for a club, seem to violate existing federal employment discrimination laws. Specifically, (1) the medical examinations at the Combine potentially violate the Americans with Disabilities Act's (ADA) prohibitions on pre-employment medical exams; (2) post-offer medical examinations that are made public potentially violate the ADA's confidentiality provisions; (3) post-offer medical examinations that reveal a disability and result in discrimination--e.g., the rescission of a contract offer--potentially violate the ADA provided the player can still perform the essential job functions; (4) Combine medical examinations that include a request for a player's family medical history potentially violate the Genetic Information Nondiscrimination Act (GINA); and (5) the preseason physical's requirement that a player disclose his family medical history potentially violates GINA. [ABSTRACT FROM AUTHOR]

Our genomic sequence constitutes the most sensitive and personal of information: uniquely identifying us, revealing our propensity to develop certain diseases and conditions, and exposing familial connections of close genetic relatives. Big Data enables consumer-genomics companies to collect, store, and electronically share genomic-sequence data in conjunction with numerous pieces of private health and personal information. Consumer curation of data currently occurs largely outside pertinent federal regulations ordinarily governing the handling of private health information, which means consumers may not fully understand the implications of the transaction during the process of submitting their genomic and health information. This article describes 23andMe's corporate model, including relevant terms contained in its consent and privacy policies of which consumers should be aware, and discusses practices currently permitted by law that pose significant informational risks to individual privacy, including exposing the consumer and his close family members to stigma, bias, discrimination, and criminal investigation. [ABSTRACT FROM AUTHOR]

Cloud computing has facilitated a revolution in genome sequencing. /As big data and personalised medicine increase in popularity in Australia, are the legal and regulatory regimes surrounding this nascent area of scientific research and clinical practice able to protect this private information? An examination of the current regulatory regime in Australia, including the Privacy Act 1988 (Cth) and medical research laws that govern cloud-based genomics research highlights that the key challenge of such research is to protect the interests of participants while also promoting collaborative research processes. This examination also highlights the potential effect that the Transpacific Partnership Agreement’s Electronic Commerce Chapter may have had on using the cloud for genomics and what the consequences may have been for researchers, clinicians and individuals. Lessons learnt here will be relevant to studying similar impacts from other trade and investment agreements such as the Trade in Services Agreement (TiSA). [ABSTRACT FROM AUTHOR]

The article focuses on the need of property-like treatment of genetic data conferred by informed consent and the Genetic Information Nondiscrimination Act of 2008 (GINA), which prohibits discrimination in employment and health insurance on the basis of an individual's genetic profile.

The article focuses on alternative framework from core aspects of anti-discrimination laws from the health law context with the Americans with Disabilities Act (ADA), and the Genetic Information Nondiscrimination Act (GINA). Topics discussed include need of reducing employment discrimination from dual criminal record and minority status, regulatory apparatus is grounded in the Fair Credit Reporting Act (FCRA) Title VII of the Civil Rights Act of 1964 and employment opportunities.

The article focuses on various federal safeguards provided by the U.S. government for protecting employees from the misuse of genetic data by the employer. Topics discussed include enactment of Genetic Information Nondiscrimination Act which limits the disclosure of genetic information in health insurance; issues associated between privacy rights and low health costs; and the role of Equal Employment Opportunity Commission in addressing the same.