Tag: counseling

Bioethics News

Family (Still) Matters

New article by our Leila Jamal: “Getting a patient’s relatives involved in the genetic counseling process is imperative in the genomic era.”

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Controlling Direct Access to Personal Health Information

By Sarah Duranske

In 1978, for the first time, an American woman could take a pregnancy test in the comfort of her own home. Critics claimed that home pregnancy tests only would be used by promiscuous or immoral women who were too ashamed to visit their doctors, but the appeal to women was undeniable. [1] Today, eight out of ten women learn they are pregnant from a home pregnancy test.[2]

In the 1980s, as the AIDS crisis swept the nation, the FDA banned the use of at-home AIDS tests over fears of poor test reliability and insufficient counseling.[3] Advocacy groups bolstered these fears by highlighting the suicide of a man who jumped off the Golden Gate Bridge after testing positive for HIV.[4]  But with improvements in testing technology and treatment options – and stymied by a stubbornly high infection rate – the FDA reversed its stance.  It encouraged home test kit applications in 1990 and approved two home collection kits in 1996.[5]  Within a year, more than 175,000 people purchased kits, and the expanded screening was not associated with any increase in the suicide rate.[6]

In 2013, the FDA shut down 23andMe’s health-related genetic tests due to concerns that users would act, or fail to act, to their detriment based on incorrect test results or unsupported clinical interpretations. In spite of experts’ concerns, 23andMe had genotyped around 400,000 individuals between its 2007 market entrance and the FDA’s 2013 action.[7] Studies consistently demonstrate (for better or worse) that people don’t change their behavior based on genetic tests that report on disease risk.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

When Ideology Trumps Reason, Do The Life Sciences Resist or Capitulate?

by Craig Klugman, Ph.D.

The world of the life sciences and medicine is being changed radically in 2017. The proposed Trump budget cuts funding for the CDC, NIH, NSF, NEH, NEA, EPA, and PHS will radically change how science is done, how much science is done and by whom. The US is withdrawing from the Paris Climate Treaty. Cuts to social security that traditionally pays for medical residents have also been proposed. The American Health Care Act will take affordable health insurance away from 23 million people. For the rest of us, the AHCA means higher premiums and less coverage. At the same time, we live in an era of “fake news,” “leaks,” incendiary tweets, and loyalty as the sign of someone’s worth. What might be the impact on medicine, the life sciences and bioethics in the Trumpian era? Will the dominant political ideology affect the practice of science and medicine in more ways than economics? Can ethics help steer a course around ideology?

One change that has already occurred under Trump is an anecdotal decrease in the number of immigrants (documented and undocumented) who are seeking medical care under concern that they will be deported if they show up to hospitals and doctor’s offices. In one case, a woman was forcibly removed the hospital where she was to be treated for a brain tumor and brought to a detention center.

Certainly, there is a U.S. history of medicine following the ideology of the government. Forced sterilization, the Tuskegee Syphilis study, the US radiation experiments and the Guatemala Syphilis studies were all government financed research created to prove a particular ideology: In these cases, species-level differences between the races and that a nuclear war was “winnable.”

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

European Parliament document announced, as one of its priority, defend women right to abortion

The European Parliament recently announced its “priorities” for its next Commission on the Status of Women are “universal access to sexual and reproductive health and rights.” The EU document implies that limiting access to abortion is an infringement of women’s rights. The EU Recommendation invites the EU Council to “counter the impact of the gag rule”, a term used by abortion advocates have used to denigrate Reagan-era policy which ensures US taxpayer only funds groups that promise not to promote or perform abortions. The text was drafted by the Committee on Women’s Rights (FEMM). FEMM’s rapporteurs described the policy as forms of “sexism and Trumpism”, and said somebody “in the Oval Office wants us to… stop repeating the claim ‘Our bodies – our rights‘”.

Critics of the document underline that the EU Council and Commission have repeatedly affirmed ‘that the organization lacks competence on abortion, a subject left to member states’ legislatures. Furthermore, the EU cannot adopt policies and actions on reproductive and sexual health and rights in developing countries that include abortion. “No support is to be given… to encourage sterilization or abortion”. The relevant rules on foreign aid must also provide that the EU cannot promote abortion as a method of family planning and that it most provide post-abortion counseling, which helps “to avoid repeat abortions”  (C-Fam – Washington USA, February 23, 2017).

La entrada European Parliament document announced, as one of its priority, defend women right to abortion aparece primero en Bioethics Observatory.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Dear Mr. President: It’s Time for Your Bioethics Commission

by Craig Klugman, Ph.D.

Last week, seven Democratic members of the U.S. House Representatives sent a letter to the White House asking President Trump to appoint a director to the Office of Science and Technology Policy (OSTP), position that normally serves as the presidential science advisor. The impetus for writing the letter was a communication from the Deputy National Science Advisor that two hoax reports, that tried to undermine climate change, were circulating through the West Wing as “science.” The Congresspersons state “Where scientific policy is concerned, the White House should make use of the latest, most broadly-supported science…Relying on factual technical and scientific data has helped make America the greatest nation in the world.” Among the signers are a PhD in math and a PhD in physics. They hold that the U.S. faces strong questions that revolve around science, both opportunities and threats, and the need for a scientist who can understand and explain the importance of objective fact to the chief executive is essential.

This article led me to think that the U.S. also faces a lot of issues regarding health and medicine and their impact on society. Consider the task of creating a new health plan, CRISPR/CAS-9, in vitro gametogenesis, the threat of Zika, extra uterine gestational systems, legalized marijuana, digital medicine—pharmaceutical computing for treating disease, head transplants, and DYI science are among the bioethical issues that will effect policy in the coming few years. Thus, it is time for President Trump to call for his Presidential Bioethics Commission.

The last bioethics advisory body ended in January 2017, although many of the staff are still winding down the office and archiving the many reports and papers produced.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

The Ethics of In Vitro Gametogenesis

Françoise Baylis comments on the ethics of using gametes derived from human induced pluripotent stem cells for future human reproduction.

__________________________________________

A recent New York Times article, provocatively titled “Babies from Skin Cells? Prospect is Unsettling to Some Experts,” has once again drawn attention to controversial research by scientists at Kyushu University in Japan who succeeded in making fertile mouse pups using eggs created through in vitro gametogenesis (IVG). This is a reproductive technology that involves creating functional gametes (sperm and eggs) from induced pluripotent stem cells. Induced pluripotent stem cells are cells derived from adult body cells (such as skin cells) that have the ability to become other body cells including reproductive cells (sperm and eggs).

Supporters of this reproductive technology eagerly anticipate similar research in humans. Indeed, enthusiasts are quick to trumpet the potential benefits of in vitro gametogenesis. These benefits fall into three general categories.

First, we are told that research to derive human gametes from induced pluripotent stem cells is important for basic science. It will advance our understanding of gamete formation, human development, and genetic disease. In turn, this increased understanding will create new options for regenerative medicine.

Second, we are told that this research will allow clinicians to improve fertility services. For example, with in vitro fertilization (IVF), women typically have to undergo hormonal stimulation and egg retrieval. This can be onerous in terms of the time required for interviews, counseling, and medical procedures. It can also be harmful. Potential psychological harms include significant stress and its sequelae.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Inner Sense and Gender Dysphoria

Steve Phillips posted on “Caring for people with gender dysphoria” almost one year ago. In his post, he referenced a talk at a previous CBHD Summer Conference by Prof. Robert George, where Dr. George posited that the concept that the belief that one’s gender is based one’s innate or inner sense rather than one’s biological/physical sex is rooted in the Gnostic idea that human beings consist of a personal mind that lives in a non-personal body and that this stands in contrast to the longstanding Christian understanding of unity of non-material soul/spirit and material body making up the whole person. I did not attend that talk but offer a recent paper by Dr. George which covers the same ground as backdrop to this post.

The reason for the discussion of Gnosticism related to an earlier point in that same blog referencing the opinion of Dr. Paul McHugh, retired psychiatrist at Johns Hopkins University, who has over the past few years published comments arguing that gender dysphoria is a result of disordered thinking, that is, a mental disorder, requiring treatment, not surgery to complete a gender transition. Dr. McHugh has made much of the fact that Johns Hopkins, despite being an early leader in gender transition surgery, decided very early on that gender transition surgery was not sufficiently efficacious and discontinued the practice.

What a difference a year can make. Johns Hopkins has recently decided to resume what they are calling gender-affirming surgery and specifically point out that when “individuals associated with Johns Hopkins exercise the right of expression, they do not speak on behalf of the institution.”

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

Rise in sexually transmitted diseases according to WHO last report

Experts have warned in the 46th edition of the spanish journal EIDON of an upturn in sexually transmitted diseases, as a result of the social and cultural changes derailing the efforts and decline achieved after the “hardest” years of the HIV epidemic. According to the latest World Health Organization (WHO) report published in August 2016,

  • 131 million people contract chlamydia each year,
  • 78 million gonorrhea and
  • 5.6 million, syphilis.

In total, 357 million new cases are caused annually by one of the most prevalent sexually transmitted pathogens. It is also estimated that there are more than 500 million people with genital herpes simplex virus (HSV), and more than 290 million women are infected with human papillomavirus (HPV). In some cases, these diseases can have serious negative consequences for reproductive health, such as infertility or mother-to-child transmission. Specifically, according to the WHO, in the last year, over 900,000 pregnant women were infected with syphilis, which due to mother-to-child transmission can result in 350,000 fetuses with different degrees of impairment, including stillbirths. Furthermore, resistance to antimicrobials is a threat to controlling these diseases worldwide. The causes of the growth of STDs are complex and rooted in social and cultural changes, among them the loss of fear of contracting a disease considered as fatal, such as HIV. “Its solution ranges from improving sex education and culture from early stages in the education of individuals to improving rapid detection systems to easy access to counseling and health care of the entire population without discrimination as to whether or not they belong to a

La entrada Rise in sexually transmitted diseases according to WHO last report aparece primero en Bioethics Observatory.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Dueling BRCA Databases: What About the Patient?

The news release Monday morning grabbed my attention:

“Study finds wide gap in quality of BRCA1/2 variant
classification between Myriad Genetics and a common public database.”

Myriad Genetics had been exclusively providing tests, for
$3000+ a pop for full BRCA gene sequencing, for 17 years before the Supreme
Court invalidated key gene patents back in 2013. Since the ruling a dozen or so
competitors have been offering tests for much lower prices. Meanwhile, Myriad
has amassed a far deeper database than anyone else, having been in the business
so much longer. And it’s proprietary.

CLASSIFYING GENE VARIANTS

(NHGRI)

Public databases of variants of health-related genes have
been around for years too. The best known, ClinVar, collects and curates data
from the biomedical literature, expert panels, reports at meetings, testing
laboratories, and individual researchers, without access to Myriad’s database.
ClinVar uses several standard technical criteria to classify variants as
“pathogenic,” “benign,” or “of uncertain significance.” (“Likely pathogenic”
and “likely benign” were used more in the past.)

ClinVar lists 5400 variants just for BRCA1. The criteria
come from population statistics, how a particular mutation alters the encoded
protein, effects on the phenotype (symptoms), and other information.
Bioinformatics meets biochemistry to predict susceptibility. The BRCA1 protein
acts as a hub of sorts where many other proteins that control DNA repair
gather. DNA Science discussed the genes behind breast and ovarian cancers here.

As gene sequences accumulate in the databases and troops of
geneticists and genetic counselors annotate them, the proportion of pathogenic
and benign entries will increase as that of the unsettling “variants of
uncertain significance” — VUS — will decrease.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.