DNA Tests are Uncovering the True Prevalence of Incest

Sarah Zhang

The Atlantic

Originally poste 18 MAR 24

Here is an excerpt:

In 1975, a psychiatric textbook put the frequency of incest at one in a million. In the 1980s, feminist scholars argued, based on the testimonies of victims, that incest was far more common than recognized, and in recent years, DNA has offered a new kind of biological proof. Widespread genetic testing is uncovering case after secret case of children born to close biological relatives-providing an unprecedented accounting of incest in modern society.

The geneticist Jim Wilson, at the University of Edinburgh, was shocked by the frequency he found in the U.K. Biobank, an anonymized research database: One in 7,000 people, according to his unpublished analysis, was born to parents who were first-degree relatives-a brother and a sister or a parent and a child. "That's way, way more than I think many people would ever imagine," he told me. And this number is just a floor: It reflects only the cases that resulted in pregnancy, that did not end in miscarriage or abortion, and that led to the birth of a child who grew into an adult who volunteered for a research study.

Most of the people affected may never know about their parentage, but these days, many are stumbling into the truth after AncestryDNA and 23andMe tests.

Neither AncestryDNA nor 23andMe informs customers about incest directly, so the thousand-plus cases [genetic genealogist CeCe Moore] knows of all come from the tiny proportion of testers who investigated further. This meant, for example, uploading their DNA profiles to a third-party genealogy site to analyze what are known as "runs of homozygosity," or ROH: long stretches where the DNA inherited from one's mother and father are identical. For a while, one popular genealogy site instructed anyone who found high ROH to contact Moore. She would call them, one by one, to explain the jargon's explosive meaning. Unwittingly, she became the keeper of what might be the world's largest database of people born out of incest.

In the overwhelming majority of cases, Moore told me, the parents are a father and a daughter or an older brother and a younger sister, meaning a child's existence was likely evidence of sexual abuse. She had no obvious place to send people reeling from such revelations, and she was not herself a trained therapist.

The info is paywalled here.

Here is a summary: 

The article "DNA Tests Are Uncovering the True Prevalence of Incest" explores how at-home DNA test kits like AncestryDNA and 23andMe are revealing that children born through incest are more common than previously thought. The story follows Steve Edsel, a man in his 40s who discovered that he is the child of two first-degree relatives: a sister and her older brother. The piece delves into the emotional journey of individuals like Steve who uncover shocking truths about their biological parents through DNA testing, shedding light on a sensitive and taboo topic prevalent across cultures. The narrative intertwines personal stories of discovery, truth, and belonging with statistical insights, highlighting the complexities and challenges faced by those who uncover such familial secrets.

How our lives end must no longer be a taboo subject

Kathryn Mannix
The Guardian
Originally published August 16, 2018

Here is an excerpt:

As we age and develop long-term health conditions, our chances of becoming suddenly ill rise; prospects for successful resuscitation fall; our youthful assumptions about length of life may be challenged; and our quality of life becomes increasingly more important to us than its length. The number of people over the age of 85 will double in the next 25 years, and dementia is already the biggest cause of death in this age group. What discussions do we need to have, and to repeat at sensible intervals, to ensure that our values and preferences are understood by the people who may be asked about them?

Our families need to know our answers to such questions as: how much treatment is too much or not enough? Do we see artificial hydration and nutrition as “treatment” or as basic care? Is life at any cost or quality of life more important to us? And what gives us quality of life? A 30-year-old attorney may not understand that being able to hear birdsong, or enjoy ice-cream, or follow the racing results, is more important to a family’s 85-year-old relative than being able to walk or shop. When we are approaching death, what important things should our carers know about us?

The info is here.

Culture and Moral Distress: What’s the Connection and Why Does It Matter?

Nancy Berlinger and Annalise Berlinger
AMA Journal of Ethics. June 2017, Volume 19, Number 6: 608-616.

Abstract

Culture is learned behavior shared among members of a group and from generation to generation within that group. In health care work, references to “culture” may also function as code for ethical uncertainty or moral distress concerning patients, families, or populations. This paper analyzes how culture can be a factor in patient-care situations that produce moral distress. It discusses three common, problematic situations in which assumptions about culture may mask more complex problems concerning family dynamics, structural barriers to health care access, or implicit bias. We offer sets of practical recommendations to encourage learning, critical thinking, and professional reflection among students, clinicians, and clinical educators.

Here is an excerpt:

Clinicians’ shortcuts for identifying “problem” patients or “difficult” families might also reveal implicit biases concerning groups. Health care professionals should understand the difference between cultural understanding that helps them respond to patients’ needs and concerns and implicit bias expressed in “cultural” terms that can perpetuate stereotypes or obscure understanding. A way to identify biased thinking that may reflect institutional culture is to consider these questions about advocacy:

1. Which patients or families does our system expect to advocate for themselves?
2. Which patients or families would we perceive or characterize as “angry” or “demanding” if they attempted to advocate for themselves?
3. Which patients or families do we choose to advocate for, and on what grounds?
4. What is our basis for each of these judgments?

The article is here.