Digital Commons @ UM Law

Sammartino, Michael

English

Supportive Yet Skeptic: \u3cem\u3eKisor V. Wilkie\u3c/em\u3e Casts Further Doubt on Difference Doctrine\u27s Longevity

Benjamin, Brit Janeway

\u3cem\u3eEctogenesis: Is There a Constitutional Right to Substrate-Independent Wombs?\u3c/em\u3e

Journal of Health Care Law and Policy 
Volume 22 Issue 2 Article 1 
Table of Contents 
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Recommended Citation 
Table of Contents, 22 J. Health Care L. & Pol'y (2020). 
Available at: https://digitalcommons.law.umaryland.edu/jhclp/vol22/iss2/1 
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JOURNAL OF HEALTH CARE LAW & POLICY 
Volume 22                                                                                                                   Number 2 
   A TRIBUTE TO KAREN ROTHENBERG 
Karen Rothenberg: Prescient, Perceptive, Persistent and 
Passionate……………………………………….……..........Diane E. Hoffmann 
 
0141 
 
A Tribute to Karen Rothenberg………………........…….……… R. Alta Charo 153 
Encomium for Karen Rothenberg…………………..........Ellen Wright Clayton 155 
How to Be a Mentor in Three Scenes………………….....….Jessica L. Roberts  159 
Scholar, Innovator, and Mentor……………………….….......Rachel Rebouchė 163 
Karen Rothenberg’s (Not So) Secret Roles and Contributions at the U.S. 
National Institutes of Health………………………..…...Benjamin E. Berkman, 
Lawrence C. Brody, Francis S. Collins, and Eric D. Green 167 
Tribute to Professor Karen Rothenberg……………………...…...Jack Schwartz 173 
Narrative Genomics: Creating a Stage for Inquiry and Bioethics 
Education…………………………………………………….….Lynn Wein Bush 177 
Bringing a Holistic Perspective to Law, Medicine, and the Humanities: A 
Tribute to Karen Rothenberg………………………………..…..Frank Pasquale 187 
Tribute to Karen Rothenberg…………………………………...........Ruth Faden 193 
My Incredible Journey with Karen…………………………....Barbara P. Fuller 195 
Karen Rothenberg: Lawyer, Teacher, Mentor, Friend………...A. Terry Walman 199 
Pedagogy and Policy: A Tribute to Karen Rothenberg’s Contributions to Health 
Law………………………………………………..…………..Michael R. Ulrich 205 
ARTICLES  
Direct-To-Consumer Ads Are Misleading: Concise Statements of Effectiveness 
Should Be Required…………………..……………………..…Robert A. Bohrer 209 
The “Principal Purpose” Driven Life: How Hospitals Should Apply ERISA’s 
Church Plan Exemption After Advocate v. Stapleton…….......Virginia L. Brown 223 
Disabled Autonomy…………………………………..….….Katherine L. Moore 245 
 


Clayton, Ellen Wright

Journal of Health Care Law and Policy 
Volume 22 Issue 2 Article 4 
Encomium for Karen Rothenberg 
Ellen Wright Clayton 
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Recommended Citation 
Ellen W. Clayton, Encomium for Karen Rothenberg, 22 J. Health Care L. & Pol'y 155 (2020). 
Available at: https://digitalcommons.law.umaryland.edu/jhclp/vol22/iss2/4 
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155 
ENCOMIUM FOR KAREN 
ROTHENBERG 
ELLEN WRIGHT CLAYTON, MD, JD 
Karen Rothenberg is an extraordinary scholar and leader who changed the 
course of my career.  In law school, I wrote my note for journal on reproductive 
genetic testing, which appeared in 1978. Then I went to medical school and did 
a residency in pediatrics. As a young assistant professor, I had given a few talks 
about genetics and law but was still trying to find my way as an investigator and 
scholar.   
That all changed when Karen and Elizabeth Thomson invited me to give a 
talk on legal and regulatory issues at an NIH conference on Reproductive Genetic 
Testing: Its Impact on Women in November, 1991.  The conferees consisted of 
an all-star cast of leading women scholars from a variety of areas including 
philosophy, history, disability rights, sociology, anthropology, psychology, law, 
and obstetrics.1  The conference was both exhilarating and exhausting because it 
made clear the excitement, the challenge, and the necessity of working across 
disciplines to understand issues in their full complexity in order to work toward 
solutions; lessons that have shaped my own work ever since.   
This conference also epitomized the essential characteristics of Karen’s 
scholarship – her passion for addressing women’s issues, her commitment to 
understanding from many perspectives what is really at stake, and her insistence 
on wrestling issues to the ground – no superficial work allowed. I turn first to an 
example from her work on genetics, our point of first contact.  When Jeff 
Struewing at the National Institutes of Health demonstrated that Ashkenazi Jews 
had a higher prevalence of specific variants in BRCA1 and BRCA2 that created 
an intermediate risk of cancer,2 Karen went to work.  She worried the results of 
Struewing’s research would stigmatize a recognized and at times disfavored 
group.3 Her analysis informed later discussions of how to prevent group harm, a 
 
© 2019 Ellen Wright Clayton, MD, JD. 
Craig-Weaver Professor of Pediatrics, Professor of Law, Professor of Health Policy, Center for 
Biomedical Ethics and Society, Vanderbilt University. 
 1. The participants were Abby Lippman, Ruth Schwartz Cohen, Deborah Kaplan, Mary Mahowald, 
Ruth Faden. Patricia A. King, R. Alta Charo, Elena A. Gates, Nancy Anne Press, Carole H. Browner, 
Rayna Rapp, Laurie Nsiah-Jefferson, Barbara Katz Rothman, and Rita Beck Black. 
 2. J. P. Struewing, et al., The Risk of Cancer Associated with Specific Mutations of BRCA1 and 
BRCA2 Among Ashkenazi Jews, 336 NEW ENGLAND J. MED. 1401 (1997). 
 3. K. H. Rothenberg, Breast Cancer, the Genetic “Quick Fix,” and the Jewish community. Ethical, 
Legal, and Social Challenges, 7 HEALTH MATRIX CLEVEL. 97 (1997); K. H. Rothenberg & A. B. Rutkin, 
  
156 JOURNAL OF HEALTH CARE LAW & POLICY [VOL. 22:155 
gnarly and still unresolved dilemma.4 Noting that individuals from whom the 
tissue samples had been obtained had not given consent for the use of these 
specimens, Karen helped to coordinate a survey of Jews about their views about 
the use of stored tissue for this type of research. This survey also covered their 
views on the acceptability of using different sources of tissues and about whether 
consent should be required.5 The investigators found that while the respondents 
were generally highly supportive of research, they wanted to provide written 
consent, particularly if the samples were collected in a clinical rather than a 
research setting. 
Karen is also a zealous advocate in the very best sense of the word.  After 
Struewing’s article appeared, she wrote an editorial that appeared in multiple 
newspapers6 arguing that women with these variants should not lose their 
insurance.7  She became deeply involved in the National Action Plan for Breast 
Cancer, a powerful grass roots organization. Additionally, she became involved 
at the National Institutes of Health and addressed, often in leadership roles, such 
issues to develop strategies to prevent genetic discrimination for individuals with 
variants that increased the risk of developing cancer, to create tools to obtain 
meaningful informed consent for research, and to govern the use of biological 
specimens.  Her work laid the foundation for the passage of the Genetic 
Information Nondiscrimination Act8 as well as the ongoing debate about use of 
biological specimens for research, most recently instantiated in the changes to 
the Regulations for the Protection of Human Research Participants that are 
currently going into effect.9 
Karen’s concern for women was not limited to genetics.  Early in her career, 
she was a vigorous advocate for including women in clinical research, during a 
time when this surprisingly was a topic of debate.10  Previously, researchers had 
 
Toward a Framework of Mutualism: the Jewish Community in Genetics Research, 1 COMMUNITY GENET. 
148 (1998). 
 4. K. M. Meagher, et al., Precisely Where Are We Going? Charting the New Terrain of Precision 
Prevention, 18 ANNU. REV. GENOMICS HU M. GENET. 369 (2017). 
 5. M. D. Schwartz, et al., Consent to the Use of Stored DNA for Genetics Research: a Survey of 
Attitudes in the Jewish Population, 98 AM. J. MED. GENET. 336 (2001). 
 6. K. Rothenberg, Miracles of genetics can bear heavy cost Participants in tests sometimes lose 
privacy and health insurance, BALTIMORE SUN July 20, 1997, accessed at 
https://www.baltimoresun.com/news/bs-xpm-1997-07-20-1997201005-story.html. 
 7. K. L. Hudson, et al., Genetic Discrimination and Health Insurance: An Urgent Need for Reform, 
270 SCIENCE 391 (1995); K. H. Rothenberg, Genetic Discrimination and Health Insurance: A Call for 
Legislative Action, 52 J. AM. MED. WOMENS ASSOC. 43 (1997). 
 8. Genetic Information Nondiscrimination Act of 2008, 42 USC §§ 2000ff et. seq., (2008). 
 9. Department of Homeland Security et al., Federal Policy for the Protection of Human Subjects, 
82 FED. REG. 7149 (2017). 
 10. Karen H Rothenberg, Gender Matters: Implications for Clinical Research and Women’s Health 
Care, 32 HOUS. L. REV. 1201(1995); Karen H Rothenberg, The Institute of Medicine’s Report on Women 
and Health Research: Implications for IRBs and the Research Community, 18 IRB: ETHICS & HUMAN 
RESEARCH 1 (1996); Eugene G Hayunga, et al., Women of Childbearing Potential in Clinical Research: 
  
2019] ENCOMIUM FOR KAREN ROTHENBERG 157 
usually studied only men because women’s hormonal cycles and potential to 
become pregnant presented too many complications. Her advocacy carried the 
day, and although progress has been made, parity has not yet been achieved,11 
particularly for pregnant or “potentially pregnable” women.12 Karen was also 
deeply concerned about the HIV/AIDS epidemic, focusing both on the 
obligations of health care providers13 and also the impact of this disease on 
women, pointing out their greatly increased risk of domestic violence.14 
This discussion represents only part of her scholarly and policy impact.  
Over the course of Karen’s career, she has written and spoken extensively about 
the right to die, medical decision-making for children, research ethics, and access 
to health care.  For the last several years, she has explored in great depth the 
potential value of using drama to reveal new perspectives on the complexities of 
advances in genomics,15 ultimately publishing her book, The Drama of DNA:  
Narrative Genomics16, with Lynn Wein Bush. Illustrating the power and wisdom 
of this endeavor, Jules Odendahl-James, an artist-scholar wrote in his book 
review “Rothenberg and Bush’s narrative . . . scenarios move across time, across 
professional and personal networks, from the research study to the clinical trial 
to the medical case. . . . [demonstrating that e]thical and empathetic 
considerations are not a barrier to cutting-edge research; they are actually key 
elements to superior, successful medical science.”17  What an important lesson. 
What makes Professor Rothenberg’s accomplishments all the more 
remarkable is that she achieved them while creating a leading health law program 
from scratch at the University of Maryland, then stepping in as dean of the 
school, and ultimately advising the leadership of the National Human Genome 
 
Perspectives of NIH Policy and Liability Issues, 13 FOOD, DRUG, COSMETIC AND MED. DEVICE L. 
DIGEST 7 (1996). 
 11. Louise Pilote & Valeria Raparelli, Participation of Women in Clinical Trials: Not Yet Time to 
Rest on Our Laurels∗  (Elsevier  2018). 
 12. Rieke van der Graaf, et al., Fair Inclusion of Pregnant Women in Clinical Trials: An Integrated 
Scientific and Ethical Approach, 19 TRIALS 78 (2018). 
 13. Karen H Rothenberg, The AIDS Project: Creating a Public Health Policy—Rights and 
Obligations of Health Care Workers, 48 MD. L. REV. 93 (1989). 
 14. Karen H Rothenberg & Stephen J Paskey, The Risk of Domestic Violence and Women with HIV 
Infection: Implications for Partner Notification, Public Policy, and the Law, 85 AM. J. OF PUB. HEALTH 
1569 (1995); Richard L North & Karen H Rothenberg, Partner Notification and the Threat of Domestic 
Violence Against Women with HIV Infection, THE NEW ENGLAND J. OF MED. 1569 (1993); Karen H 
Rothenberg & Richard L North, The Duty to Warn Dilemma and Women with AIDS: Redefining the 
Foreseeable Victim, 2 CT. HEALTH SCI. & L. 90 (1991). 
 15. Karen H Rothenberg & Lynn W Bush, Genes and Plays: Bringing ELSI Issues to Life, 14 
GENETICS IN MED. 274 (2012); Karen H. Rothenberg, From Eugenics to the ‘New’ Genetics: “The Play’s 
the Thing,” 79 FORDHAM L. REV. 407 (2010). 
 16. KAREN H ROTHENBERG & LYNN WEIN BUSH, THE DRAMA OF DNA: NARRATIVE GENOMICS 
(Oxford University Press, USA. 2014). 
 17. Jules Odendahl-James, Book Review, AM. J. BIOETHICS, Dec. 2016, at W17 (reviewing 
ROTHENBERG & BUSH, supra note 16). 
  
158 JOURNAL OF HEALTH CARE LAW & POLICY [VOL. 22:155 
Research Institute for many years, all while doing an almost immeasurable 
amount of service.  And to top it off, she was, and is, an unstintingly generous 
friend and mentor, for which I am supremely grateful. 
 


Encomium for Karen Rothenberg

Rebouchė, Rachel

Journal of Health Care Law and Policy 
Volume 22 Issue 2 Article 6 
Scholar, Innovator, and Mentor 
Rachel Rebouchė 
Follow this and additional works at: https://digitalcommons.law.umaryland.edu/jhclp 
Recommended Citation 
Rachel Rebouchė, Scholar, Innovator, and Mentor, 22 J. Health Care L. & Pol'y 163 (2020). 
Available at: https://digitalcommons.law.umaryland.edu/jhclp/vol22/iss2/6 
This Tribute is brought to you for free and open access by the Academic Journals at DigitalCommons@UM Carey 
Law. It has been accepted for inclusion in Journal of Health Care Law and Policy by an authorized editor of 
DigitalCommons@UM Carey Law. For more information, please contact smccarty@law.umaryland.edu. 
  
 
163 
SCHOLAR, INNOVATOR, AND 
MENTOR 
RACHEL REBOUCHÉ, J.D., LL.M. 
I met Professor Karen Rothenberg in 2011 when we were both visiting 
faculty members at the Berman Institute of Bioethics at Johns Hopkins 
University. I was in my second year of full-time law teaching, and Karen was an 
academic whose work I deeply admired. Karen’s scholarship on prenatal testing 
and the gender implications of clinical research (to name just two contributions) 
had transformed the field of health law.1   
I was impressed with Karen’s immediate and generous mentorship. Within 
a week of meeting at the Berman Institute, we were discussing the trajectory of 
prenatal genetic screening and testing. At faculty meetings, I learned that, in 
addition to being a well-known and respected scholar, Karen also was an avid 
student of the most cutting-edge issues in genetics and the law. After one faculty 
gathering, she approached me to talk about a new technology: non-invasive 
prenatal genetic testing (NIPT).  
NIPT is administered early in pregnancy and screens the fetus for certain 
genetic characteristics.  In 2011, NIPT had recently entered clinical practice.2  
Pregnant women traditionally relied on blood tests and ultrasounds to screen 
fetuses for genetic or physical anomalies. Depending on the level of risk, patients 
might elect a second trimester screen, followed by testing fetal cells collected 
through amniocentesis or chorionic villus sampling.3 NIPT, however, collects 
cell-free fetal DNA from a sample of the pregnant woman’s blood.4  The test is 
99% accurate at only nine or ten weeks of gestation with research demonstrating 
 
© 2019 Rachel Rebouchė, J.D., LL.M. 
 Associate Dean for Research and Professor of Law, Temple University Beasley School of Law. 
 1. See, e.g., Karen Rothenberg, The Law’s Response to Reproductive Genetic Testing: Questioning 
Assumptions about Choice, Causation, and Control, 8 FETAL DIAGNOSIS & THERAPY 160 (1993); R. Alta 
Charo & Karen H. Rothenberg, “The Good Mother:” The Limits of Reproductive Accountability and 
Genetic Choice, in WOMEN AND PRENATAL TESTING: FACING THE CHALLENGES OF GENETIC 
TECHNOLOGY 105 (Karen H. Rothenberg & Elizabeth J. Thomson eds., 1994); Karen H. Rothenberg, 
Gender Matters: Implications for Clinical Research and Women’s Health Care, 32 HOUSTON L. REV. 
1201 (1996).   
 2. Jade Bennett et al., Non-invasive Prenatal Diagnosis for BRCA Mutations – A Qualitative Pilot 
Study of Health Professional’s Views, 25 J. GENETIC COUNSELING 198, 198 (2016). 
 3. Peter A. Benn & Audrey R. Chapman, Ethical Challenges in Providing Non-Invasive Prenatal 
Diagnosis, 22 CURRENT OP. OBSTETRICS & GYNECOLOGY 128, 128-29 (2010).  
 4. Rowan Jacobsen, Designer Genes, 42 MOTHER JONES, Sept.-Oct. 2017, at 3 (stating NIPT has 
“become popular so quickly…because it’s less invasive than traditional pregnancy screening techniques”). 
  
164 JOURNAL OF HEALTH CARE LAW & POLICY [VOL. 22:163 
high levels of accuracy as early as six or seven weeks of pregnancy.5  At present, 
NIPT can identify aneuploidies (an abnormal number chromosomes in a cell) 
and detect fetal sex; however, NIPT, with advances in gene sequencing, promises 
to reveal more prenatal information in the not-too-distant future.6   
Around the time that Karen and I were discussing NIPT, Karen was invited 
to contribute an article to a symposium issue on health care law for the Howard 
Law Journal. She wanted to write about the intersection of NIPT and abortion 
restrictions.  Knowing of my interest in both topics, Karen asked if I would be 
willing to co-author a piece with her. 
Most junior faculty members, asked by a leader in their discipline to co-
author an article, might expect to do most of the work and receive half the credit. 
But that is not Karen’s approach.  We met to talk through ideas, exchanged 
numerous drafts, and worked as a team. Karen values building relationships with 
other scholars, and she sets a high standard in her research and writing while 
providing invaluable support as a collaborator.  
I learned a great deal about prenatal genetic testing in the course of co-
authoring our law review article, Mixed Messages: The Intersection of Prenatal 
Genetic Testing and Abortion.  We argued that current law and practice put 
genetic testing and abortion on a collision course; what pregnant women could 
learn about their pregnancies was expanding while, at the same time, post-testing 
options were contracting.7  We predicted that the termination of pregnancies for 
reason of fetal anomaly would become a focal point of public policy debates and 
court decisions.8   
Since we wrote Mixed Messages, state legislatures have passed laws 
banning abortion on the ground of fetal anomalies (as well as on the grounds of 
fetal sex and race).  Most of these statutes have been struck down by federal 
courts. For example, the U.S. District Court for the Southern District of Indiana 
enjoined a law that banned abortion “solely because the fetus has been diagnosed 
with, or has a potential diagnosis of, Down syndrome or any other disability.”9 
The court noted that an impetus for the Indiana law was NIPT:  
 
 5. Mary E. Norton et al., Non-Invasive Prenatal Testing for Fetal Aneuploidy: Clinical Assessment 
and a Plea for Restraint, 121 OBSTETRICS & GYNECOLOGY 847, 850 (2013).  
 6. HENRY GREELY, THE END OF SEX AND THE FUTURE OF HUMAN REPRODUCTION 86 (2016) (“In 
the longer run,…NIPT should be able to test for single gene mutations or even provide a whole genome 
sequence. By making use of information about the parents’ DNA, NIPT has already been used in [an 
experiment] to infer a fetus’s entire genome. This is currently too expensive and uncertain for clinical use, 
but that will change.”). Zuzana Deans et al., For Your Interest? The Ethical Acceptability of Using Non-
Invasive Prenatal Testing to Test ‘Purely for Information,’ 29 BIOETHICS 19, 20-21 (2015).  
 7. Rachel Rebouché & Karen Rothenberg, Mixed Messages: The Intersection of Prenatal Genetic 
Testing and Abortion, 55 HOW. L.J. 983, 986 (2012).   
 8. Id.   
 9. IND. CODE § 16-34-2-1.1(a)(1)(K); Planned Parenthood of Ind. & Ky. v. Commissioner of Ind. 
St. Dep’t of Health, 265 F.Supp.3d 859 (S.D. Ind. 2016).   
  
2019] SCHOLAR, INNOVATOR, AND MENTOR 165 
The State presents evidence that these provisions were passed in light of 
technological developments that allow the diagnosis or potential diagnosis of 
fetal disabilities to be made early in a pregnancy. In particular, cell-free fetal 
DNA testing is able to screen for several genetic abnormalities, including Down 
syndrome, as early as ten weeks into pregnancy.10  
On appeal, the U.S. Court of Appeals for the Seventh Circuit rejected the 
state’s argument that genetic screening will result in discrimination against 
fetuses with disabilities and held that the provision was an unconstitutional 
restriction on a woman’s right to pre-viability abortion.11 A similar law passed 
in North Dakota, prohibiting abortion because of “any physical disfigurement, 
scoliosis, dwarfism, Down syndrome, albinism, or any other type of physical or 
mental disability, abnormality, or disease.”12 That law was enjoined by the U.S. 
Court of Appeals for the Eighth Circuit also on the ground that it 
unconstitutionally restricted the right to pre-viability abortion.13  
These court battles highlight a point Karen has made so eloquently 
throughout her scholarship on the larger dilemmas presented by prenatal testing. 
Too often, in the midst of litigating constitutional rights in the face of anti-
abortion legislation, the lived realities of pregnant women are obscured.  After 
prenatal testing, pregnant women must make difficult decisions about 
terminating wanted pregnancies. They face pressures to test but with increasingly 
limited options of how to act upon resulting information. Karen was one of the 
first scholars to understand what those pressures mean for the quality of prenatal 
care women receive as well as the consequences for persons (and their families) 
with disabilities. 
I am delighted to be a part of this fitting and well-deserved tribute to 
Karen’s generosity of spirit and broad-reaching intellect.  When we finished our 
Mixed Messages article, Karen encouraged me to present it to the Berman 
Institute faculty and at a conference hosted by Case Western Reserve University 
 
 10. Planned Parenthood of Ind. & Ky. v. Commissioner of Ind. St. Dep’t of Health, __ F.3d __ (7th 
Cir. 2018), 2018 WL 1870566 at 5. 
 11. Id. at 862 (“The State urges that . . . it has compelling interests in prohibiting discrimination of 
particular fetuses in light of technological advances in genetic screening. . . .We cannot reweigh a 
woman’s privacy right against the State’s interest. The Supreme Court has been clear: the State may 
inform a woman’s decision before viability, but it cannot prohibit it.”). The United States Supreme Court 
recently considered Indiana’s law and decided that, without a split decision from the federal circuit courts, 
it would not rule on the constitutionality of reason-based bans on abortion.  Box v. Planned Parenthood 
of Ind. and Ky., 587 U.S. __ (2019), available at https://www.supremecourt.gov/opinions/18pdf/18-
483_3d9g.pdf. 
 12. H.B. 1305, § 2(1)(b), 63d Leg. Assemb. (N.D. 2013). 
 13. MKB Management Corp. v. Stenehjem, 795 F.3d 768 (2015) (striking down the entire bill but not 
discussing the provision on fetal disability). See also LA. REV. STAT. ANN. 40:1061.1.2 (2016) (prohibition 
to terminate “solely because the unborn child has been diagnosed with either a genetic abnormality or a 
potential for a genetic abnormality”).  A challenge to the Louisiana law was ultimately dismissed on the 
ground that the plaintiffs had no standing because all abortions were banned at 20 weeks.  June Med. Serv. 
v. Gee, No. 16-00444-BAJ-RLB, 2017 BL 411675 (M.D. La. Nov. 15, 2017). 
  
166 JOURNAL OF HEALTH CARE LAW & POLICY [VOL. 22:163 
School of Law. And I have since authored a series of articles exploring other 
aspects of NIPT.14  My collaboration with Karen was not only professionally 
rewarding but also personally enriching.  She provided significant guidance at 
an early and important stage in my career. She is, in short, a model of what legal 
academics should offer to their colleagues and students.  
 
 
 14. See, e.g., Rachel Rebouché, Non-Invasive Testing, Non-Invasive Counseling, 42 J.L. MED. & 
ETHICS 228 (2015); Rachel Rebouché, Testing Sex, 49 U. RICH. L. REV. 519 (2015); Rachel Rebouché, 
Contracting Pregnancy, 105 IOWA L. REV. __ (2020). 


Scholar, Innovator, and Mentor

Pasquale, Frank

Journal of Health Care Law and Policy 
Volume 22 Issue 2 Article 10 
Bringing a Holistic Perspective to Law, Medicine, and the 
Humanities: A Tribute to Karen Rothenberg 
Frank Pasquale 
Follow this and additional works at: https://digitalcommons.law.umaryland.edu/jhclp 
Recommended Citation 
Frank Pasquale, Bringing a Holistic Perspective to Law, Medicine, and the Humanities: A Tribute to Karen 
Rothenberg, 22 J. Health Care L. & Pol'y 187 (2020). 
Available at: https://digitalcommons.law.umaryland.edu/jhclp/vol22/iss2/10 
This Tribute is brought to you for free and open access by the Academic Journals at DigitalCommons@UM Carey 
Law. It has been accepted for inclusion in Journal of Health Care Law and Policy by an authorized editor of 
DigitalCommons@UM Carey Law. For more information, please contact smccarty@law.umaryland.edu. 
  
 
 
187 
 
BRINGING A HOLISTIC PERSPECTIVE 
TO LAW, MEDICINE, AND THE 
HUMANITIES: A TRIBUTE TO KAREN 
ROTHENBERG 
FRANK PASQUALE, J.D., MPHIL. 
As a beginning health law scholar in the mid-2000s, it was impossible not 
to hear of Karen Rothenberg’s work. Everyone knew about her tireless work to 
build the University of Maryland Health Law & Policy program into one of the 
best in the U.S., as well as her extensive scholarly work in bioethics. When I 
came to Maryland’s “Avian Flu: What Can We Do?” conference in 2006, I was 
thrilled to learn from one of her initiatives. And imagine how pleased I must have 
been to be hired by Maryland in 2013.  
Karen proved to be an invaluable mentor for me during a pretty rough 
transition into the new job. I’ve always appreciated her friendship and 
extraordinary leadership. But for this tribute, I want to focus on her scholarship, 
and particularly her work in law and literature. This is not a fashionable focus, 
given the legal academy’s current inclination to chase the cultural cachet of the 
hard sciences via what David Beer has called “the data gaze.”1 However, by 
bringing the direct personal perspectives of individuals to the center of 
conversations on the propriety of genetic medicine, Rothenberg has shown the 
enduring importance of the qualitative in fields all too prone to gloss over 
fundamental conflicts of values with ersatz quantification.  
Over the past decade or so, Rothenberg’s writing has taken a literary turn, 
first focusing on literary criticism and the Drama of DNA (the title of her book 
with Lynn Wein Bush), and then turning to the writing of plays themselves.2 As 
she explained in the Fordham Law Review in 2010, “Drama is uniquely able to 
address salient issues and to manipulate the way they are perceived through 
characters with whom the audience identifies and sympathizes. In this way, 
 
©2019 Frank Pasquale, J.D., MPhil. 
 Professor of Law, University of Maryland. I wish to thank Diane Hoffmann for organizing a set of 
tributes to Karen, and to thank Sue McCarty for help with references. 
 1. DAVID BEER, THE DATA GAZE: CAPITALISM, POWER AND PERCEPTION (2018).  
 2. KAREN H. ROTHENBERG & LYNN WEIN BUSH, THE DRAMA OF DNA: NARRATIVE GENOMICS 
(2011).  
  
188 JOURNAL OF HEALTH CARE LAW & POLICY [VOL. 22:187 
 
theatre engages in a dialogue with public opinion and social policy.”3  What’s 
particularly fascinating here is that Rothenberg is not arguing that literature will 
lead us to a “truth” about genetic engineering, or even to optimal policy in the 
area. Rather, she praises its status as more and less than truth and justice: less, in 
the sense that the arts can “manipulate” audiences (evoking Plato’s famous 
suspicion of poets); and more, in that the structured imaginative experience 
afforded by literature or performance cultivates a wisdom irreducible to logic, 
algorithms, or even propositions. 
Rothenberg’s turn to literature recognizes that our plays and poems, stories 
and films, reveal patterns of power and meaning in the world by exploring the 
ramifications of critical relationships. They illuminate fundamental aspects of 
human experience. They can trace the elemental and superficial, epochal and 
fleeting, to the ideas and institutions that shape the most important aspects of our 
lived reality. 
To assign such meaning to literature (and, even more scandalously, to 
suggest it has some import for our perception of not only social reality, but also 
of policy and law meant to shape that social reality), is to risk ostracism among 
worldly elites. As sociologist Richard H. Brown has helpfully typologized, 
modernity is typically presumed to have clearly distinguished the following 
realms:4  
 
Science Art 
truth beauty 
reality symbols 
things and events feelings and meanings 
“out-there” “in-here” 
objective  subjective 
proof  insight 
determinism freedom 
 
Fortunately, Brown only sets up these oppositions in order to reconcile 
them—or, more precisely, to create room for both sides in an intersubjective zone 
of social reality between objectivity and subjectivity.5 In A Poetic for Sociology, 
 
 3. Karen H. Rothenberg, From Eugenics to the “New” Genetics: “The Play’s the Thing,” 79 
FORDHAM L. REV. 407 (2011).  
 4. RICHARD H. BROWN, A POETIC FOR SOCIOLOGY: TOWARD A LOGIC OF DISCOVERY FOR THE 
HUMAN SCIENCES 26 (1977). 
 5. I draw this terminology from JÜRGEN HABERMAS, THEORY OF COMMUNICATIVE ACTION: VOL. 
2: LIFEWORLD AND SYSTEM: A CRITIQUE OF FUNCTIONALIST REASON (1985). The three realms of 
subjective, objective, and intersubjective map (if imperfectly) to understandings of beauty, truth, and 
justice.  
  
2019] A TRIBUTE TO KAREN ROTHENBERG 189 
 
Brown weaves together strands of thought from “pragmatists, existential 
phenomenologists, and ordinary language philosophers to replace” strict 
distinctions between facts and values.6 A phenomenological study of intent and 
context defeats reductionism.  
Rothenberg engages such a phenomenological analysis, analyzing the first-
person confrontations with mortality and heredity that genetic knowledge 
portends. There is a fundamental divide between the born and the made, but the 
more we learn about the inner workings of the DNA, the more we risk blurring 
that boundary, and treating our progeny like manufacturing projects. For 
example, consider her discussion of Jonathan Tolins’s powerful play Twilight of 
the Golds:  
When the play was first produced in Washington, D.C., it was 
described as “chillingly prescient”. . . . The plot centers on the 
character of Suzanne who finds out, through fictional cutting edge 
technology performed in her husband Rob’s lab, that her fetus is very 
likely to be gay. But early on in the play, even before she gets tested, 
Tolins sets up the tension between David, Suzanne’s gay brother, who 
serves as the narrator, and her husband, Rob. David says, “Face it, 
Rob, this is eugenics. It’s blatant Nazi philosophy.” Rob replies, “Oh, 
here we go. Every time there is the slightest scientific advance, some 
knee-jerk liberal starts shouting about the Nazis. We’re just trying to 
make life better.”7 
This juxtaposition of these critical lines of dialogue from the play 
dramatizes the power of medicine, the arrogance of some researchers, and the 
troubling implications of predictive knowledge. We usually think that the more 
we know, the better our condition will become. But as Rothenberg skillfully 
foreshadows, science can just as easily be turned to the most evil ends 
imaginable. It must be governed by law and morals, lest the powers it grants be 
misused against the most vulnerable in society. 
The ethical implications of Tolins’ scenario are obvious: abortion based on 
presumed sexual orientation is morally repugnant. In her own plays with Lynn 
Bush, Rothenberg examines more subtle dilemmas, crafting characters who must 
wrestle with the implications of more constructive medical interventions and 
research. For example, in the 2011 play “It’s Not That Simple! Genomic 
Research & the Consent Process,” Rothenberg and Bush present this scenario:  
As the play commences, we find Bobby, Amy, Sam, and Ellen Friedman in 
the Pediatric Genetic Clinic with Dr. Hardy.  Bobby is a nineteen-year-old with 
 
 6. BROWN, supra note 4, at 29.  
 7. Rothenberg, supra note 3, at 426–27. For a critical analysis of the science of sexual orientation 
prediction, see two works by Professor Edward Stein.  EDWARD STEIN, THE MISMEASURE OF DESIRE: 
THE SCIENCE, THEORY, AND ETHICS OF SEXUAL ORIENTATION (1999); Edward Stein, Choosing the 
Sexual Orientation of Children, 12 BIOETHICS 1 (1998). 
  
190 JOURNAL OF HEALTH CARE LAW & POLICY [VOL. 22:187 
 
an autosomal recessive genetic disorder. His degenerative symptoms manifested 
several years ago, and are of a similar nature to those beginning to affect his 
sister, Amy, age sixteen. Sam, their nine-year-old sibling, does not have the 
heritable condition. They reside with Ellen, their mom, who is an elementary 
school teacher. Their dad, Howie, lives in another town with his second wife and 
young son.8 
Dr. Hardy wishes to enroll the family in a new study, but some are reluctant, 
as this dialogue shows:  
MOM: Just glancing at this, why are there so many warnings in this 
consent form?   
SAM: Mom. . .Did you hear me? Can I walk over and play at 
Danny’s? 
MOM: OK, go play. I’ll take care of your consent.  
BOBBY: No wonder they need seven pages to explain things. They 
think we should be happy the whole world doesn’t see our medical 
information. Listen:  
“Researchers who have access to genetic information will take measures to 
maintain the confidentiality of your genetic information.”   
But how much of a measure, a ton or a drop in the bucket? 
These superficially simple reactions in fact lay bare deep problems in 
consent processes. As the young Bobby wants to know, when we are assured that 
our privacy is protected, can we really count on such promises? Later in the 
dialogue, Bobby’s mother is trying to reassure him about the password 
protections on such data, but he is not buying it. “Computers get broken into all 
the time,” he says. 
Written years before massive health data breaches brought the security of 
information to the top of journalists’ and policymakers’ agenda, the play is 
prophetic about substantive issues raised by a surfeit of health data. Via its 
narrative style, it offers a wisely cautionary tale of the limits of consent-based 
health data governance regimes. Bobby’s vernacular patois, riddled with the 
clichés of a layman, belies a deep wisdom about the unknowability of the future. 
Given our radical uncertainty about developments in law, its enforcement, 
genetic knowledge, and its usefulness in diagnosis and treatment, the balance of 
benefits and burdens here is impossible to calculate. It is not a problem to be 
solved, but a mystery about which we can only hope to grow wiser. Rothenberg’s 
work helps us do so. 
In his review of The Drama of DNA, Jules Odendahl-James extols the 
book’s “performance-based pedagogical approach to genomic medicine for 
 
 8. Lynn Bush & Karen Rothenberg, It’s Not That Simple! Genomic Research and the Informed 
Consent Process, 14 GENETICS IN MED. ONLINE SUPP. (2012). (This play is also on the Oxford Website 
for the book The Drama of DNA.) 
  
2019] A TRIBUTE TO KAREN ROTHENBERG 191 
 
anyone who engages its ‘drama:’ as a researcher, clinician, health care 
administrator, ethical and legal advisor, genetic counselor, patient, or 
caregiver.”9 This approach is a cornerstone of the medical humanities, which 
help ensure that humane values of patience, tolerance, and kindness inform the 
practice of medicine. Persons are not mere Hobbesian “matter in motion,” to be 
fixed like a broken clock (or discarded if unable to be ‘repaired’). Rather, when 
we are sick, we need to be understood, and not simply analyzed; healed, and not 
simply cured. And we need to talk about these needs to articulate them, rather 
than consigning the governance of health care to neoliberal technocrats’ 
bloodless cost-benefit analyses and endlessly manipulable outcome measures.  
As Odendahl explains, medical humanities includes the “use and analysis 
of representative cultural products (i.e., literature, visual art, plays, films, music, 
creative non-fiction, comics) to inspire conversations about the human 
dimensions of clinical medicine, scientific research, and the health care 
industry.”10 Rothenberg has both analyzed and produced these “representative 
cultural products.” Via that oeuvre, she has accomplished a rare academic hat 
trick, writing with deep and enduring relevance in law, medicine, and the 
humanities. She leaves a great legacy here in Maryland, and well beyond.  
 
 
 9. Jules Odendahl-James, Review of Karen H. Rothenberg and Lynn Wein Bush, 16 AM. J. 
BIOETHICS W17, W17 (2016) (reviewing KAREN H. ROTHENBERG & LYNN WEIN BUSH, THE DRAMA OF 
DNA: NARRATIVE GENOMICS (2011)). 
 10. Id.  


Bringing a Holistic Perspective to Law, Medicine, and the Humanities: A Tribute to Karen Rothenberg

Maryland Law Review 
Volume 79 Issue 3 Article 8 
Table of Contents 
Follow this and additional works at: https://digitalcommons.law.umaryland.edu/mlr 
 Part of the Law Commons 
Recommended Citation 
Table of Contents, 79 Md. L. Rev. (2020) 
Available at: https://digitalcommons.law.umaryland.edu/mlr/vol79/iss3/8 
This Front Matter is brought to you for free and open access by the Academic Journals at DigitalCommons@UM 
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MARYLAND LAW REVIEW   
VOLUME 79                                                                                 2020                                                                           NUMBER 3 
 
TABLE OF CONTENTS 
ARTICLES 
 
Platforms and the Fall of the Fourth Estate: Looking Beyond the First Amendment to 
Protect Watchdog Journalism           529 
Erin C. Carroll 
 
Curbing (or Not) Foreign Influence on U.S. Politics and Policies Through the Federal 
Taxation of Charities             590 
Johnny Rex Buckles 
 
De Facto Shareholder Primacy           652 
Jeff Schwartz 
 
Failure to Capture: Why Business Does Not Control the Rulemaking Process    700 
Gabriel Scheffler 
 
NOTES 
 
State v. Thomas: An Improper Extension of Involuntary Manslaughter to Combat the 
Opioid Epidemic             771 
Daniel P. Mooney 
 
Drawing the Line: A First Amendment Framework for Partisan Gerrymandering in the 
Wake of Rucho v. Common Cause           798 
Kyle Keraga 
 
American Legion v. American Humanist Ass’n: Exempting Longstanding Governmental 
Religious Displays from Establishment Clause Scrutiny and How the Endorsement Test 
Could Have Prevented It            836 
M. Allison Hyde 


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Encomium for Karen Rothenberg

Scholar, Innovator, and Mentor

Bringing a Holistic Perspective to Law, Medicine, and the Humanities: A Tribute to Karen Rothenberg

Table of Contents

\u3cem\u3eHumans vs. Robots\u3c/em\u3e: Rethinking Tax Policy For a More Sustainable Future

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8,311

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