Tag: parents

Bioethics Blogs

A “disabled” person speaks out against a particular form of discrimination

Amidst lots of dark and tragic stories, a bright ray on the BBC website this week: Kathleen Humberstone, a 17 year-old English girl with Down syndrome, addressed the UN in Geneva to mark World Down Syndrome Day.

Rather than reading anything I have to say, a far better use of your time would be to read what Ms. Humberstone said. You can find the full text here; if you scroll down you can listen to her speech and an eloquent talk her mother gave afterwards.

The speech is only 3 minutes 42 seconds, and the mother’s talk 5 minutes 48 seconds. It is well worth every second of your time to listen to these women. However, for those of you who don’t have the time or place to listen, I will give a few highlights here.

From Kathleen’s talk (when she refers to “testing,” she’s talking about prenatal genetic testing to detect and abort fetuses suspected to have Down syndrome):

Bonjour, Hello! I can’t believe I’m here! I’m at the UN, in Geneva! Do you know why? Because I have 47 chromosomes. That’s just crazy!! Thank you Down syndrome! I’m here to talk to you about my life and why it is worth living . . . I love everybody. I can’t help it! I hope everybody loves me. I have Down syndrome. Yes. Is that so wrong? So, why all this testing? Why? My name is Kathleen Humberstone and I love my life!!

From Kathleen’s mother’s talk:

You know that trisomy 21 happens to be one of the easiest disabilities to identify at the moment in utero. More will follow. And eventually all disabilities will be identifiable in utero. So, parents of future generations will have quite a few choices to make.

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

Texas Considers Letting Doctors Lie to Patients

by Craig Klugman, Ph.D.

The Texas Senate just passed a new bill (SB 25) that would shield doctors from a lawsuit if a baby is born with a disability even if the doctor knew of the concern and chose not to tell the parents. Opponents of the bill say that it permits doctors to lie to their patients if the doctor believes that knowledge might lead the woman to choose an abortion. The Houston Chronicle reports the bill’s aim is to “chip away at abortion rights.”

The Texas law does not go as far as a 2015 Arizona law that mandated physicians lie to patients by telling them that an abortion can be reversed. The new Texas bill would “allow” doctors to lie to patients and shield them from lawsuit unless the patient could prove gross negligence. The burden is on the patient to prove that the doctor should not have lied.

One of the first rules of professionalism that I teach in undergraduate and medical school bioethics courses is that in general, you never lie to the patient. Telling the truth is a bedrock concept necessary to respect patient autonomy. In order to make decisions, patients need to have knowledge of their condition and their treatment options (risks, benefits, and alternatives).

There are a few circumstances in which lying to patients is ethically acceptable: If the physician has strong reasons to believe that information would push the patient to do harm to him/herself or others, or if the family has requested that a patient not be told information because of cultural practices and the patient has agreed that she/he does not want to know the news.

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

When No Treatment Exists, Parents Turn to Gene Therapy to Save Their Kids

Families of patients are starting advocacy groups, raising money for research, and founding biotech companies to advance cures for rare diseases

Source: Bioethics Bulletin by the Berman Institute of Bioethics.

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

The Future of Bioethics: Organ Transplantation, Genetic Testing, and Euthanasia

By Ana Lita

When you think of bioethics, some of the first hot-button topics you may consider are organ transplantation, fertility and genetic engineering, and end-of-life-care. The Global Bioethics Initiative serves as a platform to address many bioethical questions and engages in public debates to develop resolutions to present and emerging issues.

Dr. Ana Lita, founder of the Global Bioethics Initiative, discusses the various areas GBI addresses and highlights the organization’s contributors in their prospective fields. She acknowledges the valuable contribution of the current president of GBI, Dr. Bruce Gelb, in the field of organ transplantation. She also addresses the original co-founder of GBI, Dr. Charles Debrovner, and his lifelong passion in the field of fertility and genetic engineering. Lastly, Dr. Lita offers a brief insight into the future of Bioethics in these uncertain times.

ORGAN MARKETS AND THE ETHICS OF TRANSPLANTATION 

Recent developments in immunosuppressive drugs and improved surgical techniques have now made it much easier to successfully transplant organs from one human body to another. Unfortunately, these developments have led to the rise of black-markets in human organs. This underground market is where people who need kidneys to survive or to improve the quality of their lives, for example, purchasing such organs from impoverished persons in the developing world. In January 2017, scientists announced that they successfully created the first human-pig hybrid and a pig embryo with some human characteristics. Given the increasing need for transplant organs, should such markets be regulated and legalized?  Could the success of therapeutic cloning eliminate the need to consider this option?

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

Charlie Gard – Court Gives Parents More Time in Medical Futility Conflict

In contrast to courts in the USA, courts in the UK have provided substantial guidance in medical futility conflicts.  One of the most recent of these cases involves seven-month-old Charlie Gard.  He has a mitochondrial depletion syndrome for which there is no cure.  

Clinicians at Great Ormond Street Hospital determined that continued life-sustaining treatment was inappropriate.  But Charlie’s parents would not consent.  So, clinicians asked the court for permission to stop.  They had both a detailed benefit/burden table and the concurrence of a second hospital. 

The court has given the parents time to try to raise money for a transfer to the United States for an experimental therapy.  

Source: bioethics.net, a blog maintained by the editorial staff of The American Journal of Bioethics.

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 Semantics of Therapy, Part II

A previous blog post of “The Semantics of Therapy” posed three questions about the human genome being a “patient” to be treated. One reader found the post “provocative and disturbing” and called for further explanation and discussion of the questions posed. That will take some time and several postings.

The first of the questions to be considered is this: If the “patient” is a genome, to whom does the researcher answer?   An answer from recent history may shed some light on this important issue.

33 infertile couples underwent a novel procedure at New Jersey’s Saint Barnabas Medical Center during the years 1996-2001. Embryologist Jacques Cohen used cytoplasmic transfer–ooplasm from the oocytes of fertile women was transferred into the eggs of infertile women–in the hope of establishing pregnancies in the latter. The outcome was 13 pregnancies and 17 babies from the Saint Barnabas experience (see accounts here and here).

According to a 2014 BBC article, one resulting pregnancy, which ended in miscarriage, revealed a missing X chromosome in the fetus. The same anomaly was noted in another child: one of a set of twins from a different pregnancy. Later, one child showed evidence of developmental delay. In 2014, Cohen estimated that the worldwide experience of cytoplasmic transfer between oocytes had resulted in the births of 30-50 babies, although the FDA had effectively stopped the procedure in the U.S. in 2002.

What had the follow-up on the babies born through cytoplasmic transfer been in 2014?

Due to a lack of funding, Cohen says, it hasn’t been possible to find out about how any of the children like Alana who were born from cytoplasmic transfer are doing.

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

Costa Rica’s resistance to legal IVF crumbles

Ronald Reyes/The Tico Times    

A girl named Maria José has become the first IVF baby to be born in the Central American nation of Costa Rica. Her parents, Jenny Garbanzo y José Barana, had been lobbying for the right to access IVF in Costa Rica since 2007. However, under a ruling by the Supreme Court in 2000, IVF was banned because it resulted in the destruction of embryos. It took substantial international pressure to force the government to give in.

The first IVF procedures were carried out in middle of last year at two certified private clinics.

The Inter-American Court of Human Rights (IACHR) has also ordered the government to make IVF available at public hospitals. Construction of a public fertility clinic is scheduled to begin in August next to the National Women’s Hospital, near the Costa Rican capital of San José. The government is also funding overseas training of IVF specialists from Costa Rica for the clinic. The first procedures in public hospitals will begin in 2018. 

This article is published by Michael Cook and BioEdge under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

Source: BioEdge.org.

This article was originally published on BioEdge.org under a Creative Commons License. If you enjoyed this article, visit BioEdge.org for more.

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

Human Breast Milk Sharing—Limited Regulation with Social Justice Implications

February 01, 2017

by Valeria Vavassori-Chen, MS Bioethics, Clarkson University & Icahn School of Medicine at Mount Sinai (2011)

Human Breast Milk Sharing—Limited Regulation with Social Justice Implications

After the birth of both of my children I found myself producing more milk than my kids could consume. I decided to donate my extra supply to any family whose child might need it. While researching the best venue to do so, I discovered a huge demand for free human breast milk and a completely unregulated market.

The benefits of breast milk over formula have been well documented in the medical literature. Human breast milk is naturally designed to meet all the baby’s nutritional needs, and it provides early innate immunity, which, when compared to formula-fed babies, reduces infant morbidity and mortality from infectious diseases. The World Health Organization urges that caregivers should “exclusively breastfeed infants for the child’s first six months to achieve optimal growth, development and health.” Additionally, some newborns with medical issues (especially premature babies whose digestive system is extremely immature) do not tolerate formula at all. Finally, there are many health risks associated with the use of formula.

Knowing the great benefits of human breast milk, many parents who are unable to produce enough breast milk have good reason to seek out private breast milk donors. There are, however, risks associated with human breast milk sharing. These include possible bacterial contamination and even transmission of HIV. Proper handling and storing are essential to reduce bacterial contamination, and a process called flash-heating can be used to inactivate the free-floating HIV virus.

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 significance of 37

January 30, 2017

The significance of 37

Ana Krivokuca,

MSc in Molecular Biology, PhD in Genetics

Masters in Bioethics, Clarkson University &Icahn School of Medicine at Mount Sinai (exp. June 2017)

It’s a boy! Such a familiar statement but with somewhat peculiar and mysterious echo on the morning of 29th September, 2016. While drinking my first coffee of the day, I am wondering what is so unique about this boy to put him in the headlines of CNN, The Washington Post, The New York Times, The Guardian and every other -post or -times that exist around the world . Aha! ˝World’s first baby born with new ‘three parent’ technique. Ok, this requires a larger cup of coffee….

Even though many believe that all of our genes reside in the nuclei of our cells, it’s more complicated than that. A small part of human genome (only 37 genes compared to an estimated 20,000-25,000 genes in the whole genome) is situated outside the nucleus, in the “energy factories” of the cells called mitochondria. Mutations in one of these 37 genes might cause mitochondria failure, cell damage, and even cell death. Mitochondrial diseases are usually progressive; they manifest differently and affect those parts of the body that have highest energy demands: brain, muscles or heart. These tiny pieces of DNA are inherited only from our mothers. So, each of us inherited these 37 genes from our mother, who inherited them from hers, and so on and so forth through generations.

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

Kidnapped at Birth

The question of ‘who are the real parents?’ can arise in a range of contexts. The law has traditionally regarded genetic ties as the determining factor. Other courts have placed less emphasis on genetic connection and more on intention. Still others would argue that biology, whether genetic or gestational, is not the sole factor in determining who is a parent. Surely someone who takes care of and has responsibility for a child, who loves and is loved by that child, has as much claim to be a parent as someone who is biologically related. More importantly, it seems wrong to deprive children of the people in their lives who have played significant parental roles. But what about the recent news of eighteen year old Alexis Manigo learning that Gloria Williams, the woman who raised her, has been charged with kidnapping her when she was eight hours old? Would a best interest analysis have applied were she still a minor today?

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Source: The Bioethics Program Blog, by Union Graduate College & The Icahn School of Medicine at Mount Sinai.

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.