The 21st Century Family Tree – Rising Concerns of Ancestral DNA

In recent years, ancestral DNA kits have become increasingly popular, and with decreasing costs these products have become readily accessible. Although the idea of uncovering genetic makeup is tempting to many, bioethicists have concerns about these products.

The potential risks of obtaining and sharing genetic information are not fully disclosed to consumers.  In a study published in the European Journal of Human Genetics, it was noted that the privacy policies of genetic testing companies are “murky” and fail to sufficiently inform consumers that they could receive “unexpected information.” For example, when an unexpected step-brother was identified through “George Doe’s” genetic testing results, the bombshell to the family resulted in the divorce of his parents. As these tests are accessed by more people, bioethicists foresee more “George Doe” stories.

An even greater concern is privacy. Although the companies generally allow consumers to choose whether or not to share their genetic and personal information in information-sharing databases, there is no guarantee that the information of one individual will not be indirectly identified through a relative’s genetic submission. Without appropriate privacy safeguards in place, there are real concerns that “humanity is on the verge of learning a lot of life-altering information that it can’t unlearn.”

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The Costs of Protecting Religious and Conscience Rights in Health Care

President Trump’s new push to have a government-wide enforcement of conscience protections in healthcare may cost the healthcare system over $300 million to implement and an estimated $125 per year to maintain in following years.  The cost to the government is estimated at $900,000 per year.  The “right of conscience” refers to the rights of healthcare professionals to refuse care to patients based on the clinicians’ personal and religious beliefs.

Prior to Trump’s election there was, on average, one complaint filed per year that alleged a violation of conscience and religious rights. Since his election, this number has increased to over 40 complaints each year.  Traditionally, issues of conscience and religious objections have been reserved for healthcare facilities to handle internally. However, some workers claimed that such internal resolutions were often ineffective, and they were forced to participate in certain procedures despite their objections.  The government’s new enforcement efforts raise concerns not only about costs, but about whether they will provide an avenue for doctors to discriminate against patients and deny necessary care on the alleged grounds of conscience and religious objections.

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What Will Your Genome Sequence Say About You?

Scientists have created a handheld device no bigger than a smartphone that is capable of sequencing the human genome in a matter of minutes. The device will allow users, including physicians, hospitals, and individual patients, to quickly decode genomes and apply the results in patient care.

In the short term, the device can promote patient-centered care that is tailored to a patient’s individual needs and genetic composition. However, researchers also hope to use the decoded genomes obtained from the device to better understand how genetic sequencing affects overall public health. Even though the human genome has been successfully decoded, much remains to be learned about various aspects of the genome sequence.

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Freedom in Gender Identity in the State of Washington

The New Year in the State of Washington brings a positive change for the LGBTQ community. Effective January 27, 2018, Washington residents who do not identify with the male or female gender will now have the option to change their birth certificate and have an “X” displayed as their gender. For adults, this change can be made without the approval of a physician. Minors will need to provide consent from a parent or legal guardian as well as additional documentation from a physician.

Advocates believe giving non-binary individuals this freedom to choose gender “X” will reduce discrimination and harassment associated with a physical appearance that does not match the gender displayed on identifying documents. Oregon and California have similar policies on their agenda to take effect in 2018, and it is the hopes of advocacy groups that other states will follow suit.

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New York Approves Use of Medical Marijuana for PTSD Treatment

New York has become the latest state to legalize medical marijuana for treatment of post-traumatic stress disorder (“PTSD”). New York will join 28 states and the District of Columbia which have already approved such use of medical marijuana. The news was widely celebrated by many veterans groups who have found their current treatments too severe or ineffective.

Veterans groups also hope this trend in state law will motivate change in federal law, which currently prohibits physicians engaged by the U.S. Department of Veteran Affairs from prescribing medical marijuana to veterans for PTSD. Some commentators contend that evidence on the efficacy of medical marijuana has been inconclusive and therefore, the legalization of such treatment is premature, but clinical trials assessing the effectiveness of medical marijuana in treating PTSD are ongoing.

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Controversial U.K. Policy Withholding Surgery from Smokers and Obese Patients

The United Kingdom’s county of Hertfordshire has expanded a controversial health care policy that withholds surgery from patients who are obese or who smoke. The policy was originally implemented in 2011 and, at the time, only applied to hip and knee operations. In 2012, it was expanded to include other non-urgent routine surgeries. Under the policy, patients were banned from having surgery for a specific period of time as an effort to urge them to improve their health by losing weight or quitting smoking in order to become eligible for surgery. However, the most recent expansion of the policy is labeled as an “indefinite” ban on all routine surgeries until the patient’s health is improved.

Proponents assert that the expanded policy will help patients improve their health while also alleviating the county’s health care budget and reducing length of hospital stays. Opponents, however, argue that the policy is unethical.  One professor of psychology, Robert West, has expressed that “[r]ationing treatment on the basis of unhealthy behaviors betrays an extraordinary naivety about what drives those behaviors.” Although reducing obesity and smoking prior to any surgery is beneficial to a patient’s recovery, it remains unclear whether withholding surgery altogether is actually successful in improving overall health.

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Ethical Dilemmas Presented by the Legal Euthanization of the Mentally Ill

Cornelia Geerts, a fifty-nine year old woman who struggled with mental illness in Belgium, asked her psychiatrist to help her end her own life. In 2014, about one year after her initial request, a physician administered a lethal dose of drugs that killed her. Euthanasia is currently legal in only five countries: Canada, Colombia, Luxembourg, the Netherlands, and Belgium, where Ms. Geerts’ death occurred. Euthanasia is not legal anywhere in the U.S., but six states and Washington D.C. have legalized physician assisted suicide, which allows physicians to prescribe lethal drugs to terminally ill patients for patients to administer themselves. Belgium and Luxembourg permit euthanasia of people suffering from terminal illnesses as well as people suffering from mental illnesses, who may not be at the end of life.

The number of patients euthanized because of psychological suffering makes up a small percentage of euthanization cases in Belgium—of the approximate 2,000 euthanasia deaths that occur per year, only about 40 involve those who were suffering from mental illness. Though these cases are few, they highlight the bioethical dilemmas that physicians and lawmakers face in dealing with mental health issues and an individual’s right to make his or her own healthcare decisions. Advocates argue that individuals suffering from mental illness should be afforded the same rights as those who suffer from a physical illness. Yet, others believe that it is nearly impossible to know when a mentally ill individual decides to end his or her own life with sound mental capacity and not as a result of their underlying mental health disorder. Opponents believe that society has a responsibility to help those suffering from mental illness and to find help through means other than euthanasia.

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Hospital Puts Transplant for Two-Year Old Patient on Hold after Donor, the Patient’s Father, is Arrested

Two-year-old A.J. Dickerson, who was born without kidneys, was awaiting a transplant from his father, Anthony Dickerson.  However, after Anthony was arrested just days prior to the scheduled procedure, Emory University Hospital put the procedure on hold.  Even though Anthony was subsequently released from jail and is available to undergo surgery, the Hospital is requiring that Anthony comply with his parole obligations for at least 3 months before they continue with the transplant.

Such decisions to halt a transplant can entail added risk to the patient. Without the procedure, A.J.—who has already suffered a stroke because of his condition—may not survive the 3 month period required by the Hospital, or the long wait to find an alternative donor from the donor list.  A.J.’s family contends that the transplant should not be contingent on the actions of the father, but should focus on preserving the life of the child.

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Tags: Transplant, Donor, News

Sweden Dismisses Investigation of Stem Cell Scientist

Swedish authorities have dismissed claims against Dr. Paolo Macchiarini, an Italian stem cell scientist, who had been under investigation for voluntary manslaughter in connection with the death of three of his patients following windpipe transplants that were made partly from the patients’ own stem cells. The procedure is considered experimental by many researchers and experts. Yet, many scientists and physicians believe it could revolutionize medicine, particularly in regards to organ renewal and growth of new organs in laboratory settings.

The Swedish authorities argued that the use of “artificial” windpipes is negligent and medically unjust. However, there is very little consensus from medical experts regarding treatment and standard protocols that should be implemented with stem cell research. In addition, the Swedish authorities could not establish a direct connection between Dr. Macchiarini’s actions and the deaths of his patients. Without sufficient causation or standard of care protocols, the claims against Dr. Macchiarini were dismissed.

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Catholic Health Services Provider Faces Lawsuit for Denying Transgender Surgery

Seventeen year old Paxton Enstad, a transgender male, sought chest-reconstruction surgery as part of his gender dysphoria treatment.  When his parents, Cheryl and Mark Enstad, sought to obtain pre-authorization for the surgery, PeaceHealth St. Joseph Medical Center, a Catholic organization, denied the services without offering a rationale as to why it was denied.

The Enstads filed suit in U.S. District Court, claiming that PeaceHealth’s refusal to cover the services violates the Affordable Care Act (“ACA”) and the State of Washington’s anti-discrimination laws.  Specifically, they claim that the refusal to authorize the surgery enforces gender stereotypes and amounts to gender discrimination.

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Read Complaint Here.