The Ethics of Genetic Manipulation and Designer Babies

Imagine a world in which humans could manipulate embryo DNA to prevent disease. Every parent could guarantee that their child would be born as healthy as possible. While it may sound too good to be true, recent genetic technology has turned this far-fetched idea into a reality and has sparked debate regarding the ethics of this novel technology.

With tremendous development in the field of genetics, scientists have enhanced their knowledge on manipulation of the human genome. CRISPR/Cas9 is a new technology that edits genes by precisely cutting DNA and either disrupting, deleting, or correcting and inserting new DNA into a target position (1). In embryos, this technique could be used to target genes associated with disease and correct them in order to create a healthier embryo.

On the surface, this seems like a very positive idea. Yet, CRISPR also has the potential to be used for much more than just disease prevention. What if a parent could design a baby with a high IQ, a height of 6 '10, and perfect pitch? This child would have an advantage in school with their high IQ, in sports like basketball because of their height, and in music with their perfect pitch. Many scientists question the uses of this technology and the ways in which it challenges human ethics. For example, genetic modification has a clear potential to create a larger divide between social and economic classes, as access to CRISPR is not cheap. Therefore, the only people who could afford to create children without disease or with certain life advantages are those with extreme wealth.

Furthermore, we as a society dream about creating the “perfect offspring,” but who defines that? Should humans be allowed to create a generation of “superior” beings that are outstanding mathematicians, athletes, or musicians?

Gene editing has been in the news for quite some time, especially with the recent announcement of the first genetically designed babies in 2018. Jiankui He, a researcher from the Southern University of Science and Technology of China, announced at the Second International Summit on Human Genome Editing in Hong Kong that he had created the world's first genetically altered babies (3). This caused an uproar because his research had not been approved and it brought to life many of the previously intangible problems with genetic testing on embryos; now these children could grow up as experiments and researchers would constantly want to monitor them to understand the implications of this groundbreaking technology. Many countries already have implemented more strict guidelines regulating human embryo experiments (3).

The future of gene editing has also been explored in the media through the creation of the 1997 movie “Gattaca.” Set in the U.S. in a futuristic society, “Gattaca” follows two brothers’ experiences in a world where people are defined by their genetic code. One brother is a designer baby, created in a petri dish, while the other was conceived naturally. Their lives differ in many ways, including access to certain types of jobs and one brother having more advantages and opportunities (4). The ‘designer’ brother works for the equivalent of NASA while his brother cannot work for them due to his genetic inferiority. The film explores the complex societal issues that this kind of technology creates and examines potential consequences of letting genetic modification control the future.

While there are clear drawbacks to embryo editing, there are also the previously stated advantages of eliminating certain life-threatening diseases. There is no clear answer on whether this technology will or should be utilized going forward, but it is something that should continue to be discussed, as it will likely play an important role in the near future.

Edited by: Reena Kagan

Graphic Designed by: Makayla Gorski

References

1. https://crisprtx.com/gene-editing/crispr-cas9

2. https://www.bioexplorer.net/designer-babies-pros-and-cons.html/

3. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6431114/

4. https://embryo.asu.edu/pages/gattaca-1997

Detention of Pregnant Women at the US-Mexico Border

Every year, thousands of migrants are detained at the US-Mexico border, of which a small proportion are pregnant women. However, this proportion has significantly increased throughout the past decade and continues to be a significant problem today. The U.S. Immigration and Customs Enforcement (ICE) and Removal Operations reported that pregnant women accounted for roughly 0.3% of all detainees (965 detainees) in 2008, which had risen to roughly 0.4% (1377 detainees) and 0.5% (2094 detainees) in 2016 and 2018, respectively. Although these proportions may not be very large, the sheer number of mothers affected is cause for concern. Furthermore, investigations have found evidence of frequent mistreatment and abuse in ICE detention centers and U.S. Immigration Facilities, leading to miscarriages, adverse birth outcomes, and serious physical and mental impacts on the mothers (Immigration Detention: Care of Pregnant Women in DHS Facilities, 2021).

In 2018, the Trump administration gave immigration authorities full jurisdiction regarding the detainment and detention of pregnant women when they did away with presumptive release guidelines that required all pregnant detainees to be immediately released under another federal law or when deemed a national security threat. As a result, the number of detained pregnant individuals nearly doubled, decreasing available resources at facilities and posing serious health risks for expectant mothers and their babies. Although the Biden Administration has reimplemented presumptive release guidelines through executive order, it has failed to address numerous reports of inadequate and improper care at border facilities. (U.S. Immigrations and Customs Enforcement, 2017).

For example, while Customs and Border Protection (CBP) policy explicitly prohibits detention of individuals longer than 72 hours, an American Civil Liberties Union (ACLU) report found that pregnant women are regularly held beyond this limit and experience improper living conditions, verbal abuse, poor medical care, and even separation from their newborns (ACLU, 2020). Additional investigations by Human Rights Watch revealed CBP admitting to being unable to provide sleeping mats, basic hygienic products, and clean food and water. Furthermore, families are often separated when adults and children are held in different cells, which has adverse mental and physical effects on the childrens’ well-being (Rabin, 2009). In some cases, this mistreatment has become inhumane: detainees have reported being denied breast pumps and being shackled during labor despite physician orders, which patients have described as horrifying and causing feelings consistent with post-traumatic stress disorder (Preston, 2008).

The United States has long stated its commitment to uphold principles of basic human rights, yet such reports of mistreatment of pregnant migrants have persisted for decades. The Biden Administration’s Executive Order significantly reduced many detentions of pregnant women, yet the lack of consistent health standards has made additional progress difficult (Spiegel, 2019). While rewriting health standards may have some impact, the lack of accountability and oversight of US Immigration Centers and ICE-CBP officers further complicates matters.

Immigration policy has been the center of a long political debate. However, the humane treatment of detainees and asylees—especially pregnant women—should not be controversial. As the United States pursues new immigration policy, it is crucial that there is a focus on the proper treatment of pregnant women, who are experiencing one of the most vulnerable and risky periods of their lives and require sufficient medical care. Ensuring the safe and respectful treatment of pregnant women at the border is not only a moral obligation, but a necessary step towards building a just and compassionate immigration system.

Edited by: Reena Kagan

Graphic Designed by: Simone Nabors

References

1. ACLU. (2020, January 22). ACLU of San Diego and Imperial Counties. https://www.aclu-sdic.org/wp-content/uploads/2020/01/2020-01-22-OIG-Complaint-1-FINAL-1.pdf

2. Immigration Detention: Care of Pregnant Women in DHS Facilities. (2021, April 21). U.S. GAO. https://www.gao.gov/products/gao-20-330

3. Preston, J. (2008, July 19). Immigrant, Pregnant, Is Jailed Under Pact. The New York Times. https://www.nytimes.com/2008/07/20/us/20immig.html

4. Rabin, N. (2009). Unseen Prisoners: A Report on Women in Immigration Detention Facilities in Arizona. Social Science Research Network.

5. Spiegel P, Kass N, Rubenstein L. Can Physicians Work in US Immigration Detention Facilities While Upholding Their Hippocratic Oath? JAMA. 2019;322(15):1445–1446. doi:10.1001/jama.2019.12567

6. U.S. Immigrations and Customs Enforcement. (2017, December 14). ICE Directive 11032.3: Identification and Monitoring of Pregnant Detainees [Press release]. https://immpolicytracking.org/policies/ice-ends-presumption-of-release-for-pregnant-detainees/#/tab-policy-documents

Since Henrietta Lacks: What Has Changed?

Seventy-two years ago, a poor black woman walked into a hospital in Baltimore looking for treatment for her vaginal bleeding. When doctors examined her, they found a malignant tumor on her cervix. She was subjected to biopsies and treated with radiation that burned her skin off. Several decades later, the cells from her biopsy–the now infamous HeLa cells– were used for the discovery of medical advancements that made billions of dollars. The woman, Henrietta Lacks, and her legacy, were condemned to a single line in history books, forgotten by the physicians who treated her and forgotten by medicine.

How much has changed since then? Women, and specifically black women, are still undertreated and underserved. Black women have higher rates of chronic diseases like hypertension, diabetes, and breast cancer, and have higher maternal mortality rates than any other demographic in the United States. In other countries around the world, females are routinely subject to a horrifying procedure known as “female genital mutilation,” sometimes at an age as young as 10 and oftentimes without anesthesia. No matter how many strides in “equality” we claim to have made, a simple truth remains: the medical community has failed its women, particularly women of color.

What can we do? Many of the disparities in medical care center around harmful views of women–that women are promiscuous, that women overstate their pain, that women complain too much, that women should not be afforded the same rights as men, and other biases, implicit or explicit, that shape womens’ experience in health systems. Instituting more robust medical education that focus on the disparities faced by women in the health system, instituting bias training for health workers, and perhaps most importantly, confronting our own assumptions about women, no matter how insignificant they may seem.

**In this blog post, the term “women” is used to refer to all individuals who are female-identifying or female-presenting

Edited by: Eric Lee

Graphic Designed by: Ariha Mehta