[Annotated] Recent events highlights an unpleasant scientific practice : ethics dumping

Rich-world scientists conduct questionable experiments in poor countries 

The announcement in November of^[각주:1] the editing of the genomes of two embryos that are now baby girls, by He Jiankui, a Chinese DNA-sequencing expert - brought much righteous, and rightful^[각주:2], condemnation^[각주:3]. But it also brought a lot of tut-tutting from^[각주:4] the outside world about how this sort of things was to be expected in a place like China, where regulations, whatever they may say on paper, are laxly enforced^[각주:5]. Dig deeper, though, and what happened starts to look more intriguing than just the story of a lone^[각주:6] maverick^[각주:7] having gone off the rails in^[각주:8] a place with lax regulation^[각주:9]. It may instead be an example of a phenomenon called ethics dumping^[각주:10]. 

Ethics dumping is the carrying out by researchers from one country (usually rich, and with strict regulations) in another (usually less well off^[각주:11], and with laxer laws^[각주:12]) of an experiment that would not be permitted at home, or of one that might be permitted, but in a way that would be frowned on^[각주:13]. The most worrisome cases^[각주:14] involve medical research, in which health, and possibly lives, are at stake^[각주:15]. But other investigations - anthropological ones^[각주:16], for example - may also be carried out in a more cavalier fashion abroad^[각주:17]. As science becomes more international the risk of ethics dumping, both intentional and unintentional, has risen. The suggestion in this case is that Dr He was encouraged and assisted in his project by a researcher at an American university. 

The scientist in question is Michael Deem of Rice University in Houston, Texas. Dr Deem was Dr He's PhD supervisor between 2007 and 2010, and has continued to collaborate with him^[각주:18]. The two are co-authors of at least eight published papers and several as-yet-unpublished manuscripts. Dr Deem also appears (along with nine others, all Chinese, including Dr He) on the author list of a paper, "Birth of twins after genome editing for HIV resistance^[각주:19]", which Dr He submitted to Nature^[각주:20] before his announcement of his work at a meeting in Hong Kong. Nature's editors rejected the paper (and will not, as is normal procedure in the case of rejection, confirm that they actually received it). 

According to a Chinese scientist involved in the genetically modified embryo project^[각주:21], which used a technique known as CRISPR-Cas9 to disable the gene for CCR5, a protein that HIV attaches itself to when entering a cell, Dr Deem participated as a member of the project team in the procedures in which potential volunteers gave their consent^[각주:22]. Dr Deem will not comment. But a statement from his lawyers said, "Michael Deem has done theoretical work on CRISPR-Cas. But Dr Deem has not designed, carried out, or executed studies or experiments related to CRISPR-Cas9 gene editing - something very different. He did not authorize submission of manuscripts related to^[각주:23] CCR5 or PCSK9 [an unrelated protein involved in cholesterol transport] with any journal, and he was not the lead, last, or corresponding author on^[각주:24] any such manuscript. And Dr Deem was not in China, and he did not otherwise participate, when the parents of the reported CCR5-edited children provided informed consent." 

In America, in effect, the implantation of^[각주:25] genetically modified embryos into a woman's womb is forbidden. Such an experimental medical procedure would require permission from the country's Food and Drug Administration, and such permission would not be forthcoming^[각주:26]. Carrying on regardless^[각주:27] would be a federal crime and one that, according to Hank Greely, a lawyer and bioethicist at Stanford University, might attract a fine of^[각주:28] as much as $100,000, and a year in jail. 

For an American to support the execution of such work in another country is, though, a different matter. That would not be illegal under American law - though it would still violate federal rules if Dr Deem participated in the project without the approval of his university, which is investigating his role in the affair^[각주:29]. Rice says it "had not knowledge of the work^[각주:30]", and, to its best knowledge^[각주:31], "none of the clinical work was performed in the United States." It would not comment on the ongoing investigation. Neither Dr Deem nor his lawyers would comment on the specific suggestion that he had committed ethics dumping. 

Trust. And verify^[각주:32] 

Across the Atlantic from America, the Commission of the European Union (EU) has sponsored a three-year, €2.7m investigation into ethics dumping. TRUST, as it is called, has been a collaboration between researchers from Europe, Africa and Asia, which came to an end last year^[각주:33]. It scrutinized past examples of^[각주:34] ethics dumping and sought ways of stopping similar things happening in the future. As Doris Schroeder of the University of Central Lancashire, in England, who led the TRUST project, observes, "sometimes it's because of the lack of awareness [of the laws in other nations]. Sometimes it's about having double standards^[각주:35]. We've certainly seen cases where there was a definite attempt to avoid legislation in^[각주:36] European countries." 

Zhai Xiaomei, the executive director of the Centre for Bioethics at the Chinese Academy of Medical Sciences, in Beijing, who is also deputy director of the health ministry's ethics committee^[각주:37], welcomes what TRUST has done. "China's weak ethics governance has made it an attractive destination for the export of unethical practices from^[각주:38] the developed world," she says. One high-profile case in^[각주:39] China concerns Sergio Canavero, an Italian neurosurgeon who resigned from the University of Turin in 2015 because of fierce opposition to^[각주:40] his plan to perform head transplants on human beings. Knowing that no country in Europe or North America would approve such procedures, Dr Canavero went to China, which he says "is quite different from the West" and "has a different ethics". 

There, he collaborated with Ren Xiaoping, an orthopaedic surgeon at^[각주:41] Harbin Medical University, on dogs, monkeys and human cadavers^[각주:42], and planned, last year, to graft the head of a patient paralyzed from^[각주:43] the neck down onto the body of a deceased donor^[각주:44] - only to be stopped by China's health ministry at the last minute. "The proposed procedure is based on astonishingly thin scientific evidence," says Dr Zhai. "It's not only ethically indefensible^[각주:45] but against the Chinese law." For his part Dr Canavero says, "we shouldn't have announced the plan before the two papers [on dogs and on human cadavers] came out."

A dozen similar cases in Asia and Africa fill "Ethics Dumping: Case Studies from North-South Research Collaboration", a book published by TRUST. Three notable examples are American-financed clinical trials that happened in^[각주:46] India between 1998 and 2015. These were testing the efficacy of^[각주:47] cheap cervical-screening methods^[각주:48]. Such trials require control groups^[각주:49], which, in America, would be composed of^[각주:50] women undergoing an established screening procedure. In the Indian trials, however, the controls - a total of 141,000 women - were not offered the pap smears that^[각주:51] were supposed (though they were in practice often unavailable^[각주:52]) to be the standard for screening in India at the time. 

Nor need behaving badly abroad as a researcher be life-threatening to^[각주:53] be unacceptable^[각주:54]. Another case highlighted by TRUST involved the San, a group of people in southern Africa well known to (and well studied by) the outside world because of their hunter-gatherer way of life^[각주:55], click-laden languages^[각주:56] and ancient rock art. In 2010 a paper published in Nature on the first San genome to be sequenced^[각주:57] caused an outcry among some San^[각주:58]. According to Roger Chennells, a human-rights lawyer at Stellenbosch University, in South Africa, they found the consent procedures^[각주:59] inappropriate and some of the language used in the paper, such as "Bushmen", pejorative. 

As part of the TRUST project^[각주:60], Mr Chennells and his colleagues helped groups of San develop the first code of ethics created by an indigenous group in^[각주:61] Africa. It requires researchers wishing to study San culture, genes or heritage to submit proposals to a review panel set up by San communities. It also asks researchers to treat people with respect, and to consider how their work could benefit local health care, education and jobs. 

Analysis of past transgressions^[각주:62] has led TRUST's researchers to suggest a set of guidelines called the Global Code of Conduct for Research in Resource-Poor Settings. This aims to raise awareness of bad practices^[각주:63], and to identify potential offences. A cornerstone of the code is^[각주:64] that ethics reviews be conducted in all participating countries - those where the work will be carried out as well as those paying for it. According to Dr Schroeder, two European funding agencies^[각주:65] - the commission itself, and the European & Developing Countries Clinical Trials Partnership, a joint effort by the EU, Norway, Switzerland and a group of drug companies - have already accepted the code. Meanwhile, in America, Kiran Musunuru, a gene-editing expert at the University of Pennsylvania, who was one of the first to look at Dr He's data last year, suggests the creation of an international register for research involving the genetic modification of^[각주:66] human embryos, with registration being a condition for subsequent publication. 

The latest twist in^[각주:67] the CRISPR-babies saga^[각주:68] itself is that Dr Deem was supposed to take up a position this month as Dean of the College of Engineering at the City University of Hong Kong. The offer was made before news of the birth of genetically modified babies broke. Dr Deem's possible involvement in the affair has led the City University to put the contract on hold^[각주:69] - at least until the investigation at Rice comes to a conclusion^[각주:70]. The City University's press office^[각주:71] would not say whether the University would terminate the contract^[각주:72] if Dr Deem is found to have been involved in the project, and neither Dr Deem nor his lawyers would comment on the matter. But, as one senior faculty member of the City University^[각주:73], who spoke on condition of anonymity^[각주:74], puts it, if the accusations being made turn out to be true, then "Dr Deem has committed a grave error of judgement^[각주:75] and violated international norms^[각주:76]. He is obviously not fit for such a senior academic position^[각주:77]. We don't want ethics dumping here." 

1. in 이랑 of 둘다 announcement 를 수식하는 것을 확인 [본문으로]
2. rightful ; [형용사] (명사 앞에만 씀) (격식) 합법적인, 적법한, 정당한 ; 유의어 proper ;; [ADJ] If you say that someone or something has returned to its rightful place or position, they have returned to the place or position that you think they should have. [본문으로]
3. condemnation ; [U, C] ~ (of sb/sth) 비난 ;; [NOUN] Condemnation is the act of saying that something or someone is very bad and unacceptable. [본문으로]
4. tut-tut ; [감탄사, 명사, 자동사] If you tut-tut about something, you express your disapproval of it, especially by making a sound with your tongue touching the top of your mouth. [본문으로]
5. laxly ; [부사] 해이하게; 명확하지 않게. [본문으로]
6. lone ; [명사 앞에만 씀] 1. 혼자인, 단독의 ; 유의어 solitary [본문으로]
7. maverick ; 2. [구어] [종종 형용사적으로] 독립 독행하는 사람; 무소속 정치가[예술가 등], 이단자, 반체제파의 사람 ;; [NOUN] If you describe someone as a maverick, you mean that they are unconventional and independent, and do not think or behave in the same way as other people. ;; 미국∙영국 [ˈmævərɪk] [본문으로]
8. go off the rail ; 레일에서 벗어나다 ;; 정도를 벗어나다 [본문으로]
9. lax ; 1. (못마땅함) (일·규칙·기준 등에 대해) 느슨한[해이한] ; 유의어 slack, careless ;; [ADJ] If you say that a person's behaviour or a system is lax, you mean they are not careful or strict about maintaining high standards. [본문으로]
10. ethics dumping ; European Commission coined the phrase “ethics dumping” to describe the export of unethical research practices to low and middle income countries [본문으로]
11. well off ; [형용사] 1. (비교급 better ˈoff) 부유한, 잘사는 ; 유의어 rich ;; 2. (비교급 better ˈoff, 최상급 best ˈoff) 사정[형편]이 좋은 반의어 badly off [본문으로]
12. lax ; 1. (못마땅함) (일·규칙·기준 등에 대해) 느슨한[해이한] ; 유의어 slack, careless ;; [ADJ] If you say that a person's behaviour or a system is lax, you mean they are not careful or strict about maintaining high standards. [본문으로]
13. frown on sb/sth ; to disapprove of somebody/something [본문으로]
14. worrisome ; (특히 美) 걱정스럽게 만드는, 걱정스러운 ;; [ADJ] Something that is worrisome causes people to worry. [본문으로]
15. at stake ; 성패가 달려 있는, 위태로운 ;; that can be won or lost, depending on the success of a particular action [본문으로]
16. anthropological (anthropologic) ;; [형용사] 인류학적인, 인류학상의. [본문으로]
17. cavalier ; 1. 기사다운[인 체하는] ;; 2. 호탕한, 무관심한(careless) ;; 3. 거만한(arrogant) ;; [ADJ] If you describe a person or their behaviour as cavalier, you are criticizing them because you think that they do not consider other people's feelings or take account of the seriousness of a situation. ;; 미국식 [-ˈlɪr] 영국식 [ˌkævəˈlɪə(r)] [본문으로]
18. collaborate ; 1. [자동사] ~ (with sb) (on sth) | ~ (with sb) (in sth/in doing sth) 협력하다, 공동으로 작업하다 [본문으로]
19. resistance ; 3. [U, sing.] ~ (to sth) (감염 등에 대한) 저항력 [본문으로]
20. submit ; 1. [타동사][VN] ~ sth (to sb/sth) (서류·제안서 등을) 제출하다 [본문으로]
21. embryo ; [명사] pl. -os 배아(인간의 경우는 수정 후 첫 8주까지의 태아) ;; [NOUN] An embryo is an unborn animal or human being in the very early stages of development. [본문으로]
22. give one's consent (to) ; ~에 동의하다, ~를 승낙하다 [본문으로]
23. submission ; 2. [U, C] (서류·제안서 등의) 제출; (의견의) 개진 [본문으로]
24. corresponding ; [형용사] 1. (다른 것에) 상당하는, 상대하는, 대응하는, 해당하는, 부합하는(agreeing, equivalent), 유사한(similar, analogous)(to, with). [본문으로]
25. implantation ; [U, C] 1. 심어넣기, 이식; 가르침, 주입, 고취. ;; 2. (의학) (종양 세포의) 새로운 곳으로의 전이(轉移); 착상(着床); (고형 약품의) 피하 주입. [본문으로]
26. forthcoming ; 1. 곧 나타나려고 하는, 가까이 다가오는, 때가 가까워오는, 닥쳐오는. ;; 2. [부정문에서] 가까이 준비되어 있는, 곧 입수되는; 이용할 수 있는. ;; [ADJ] [ADJ n] A forthcoming event is planned to happen soon. [본문으로]
27. regardless ; [부사] [구어] 비용[반대, 어려움, 결과 ((등))]을 무릅쓰고; 그럼에도 불구하고, 여하튼 [본문으로]
28. attract ; 3. [英] 〔비용 따위〕를 필요로 하다, 수반하다. [본문으로]
29. in the affair ; 그 건으로 [본문으로]
30. have knowledge of ; ~을 알다 [본문으로]
31. to (the best of) one's knowledge ; …이 알고 있는 바로는, 확실히, 틀림없이 [본문으로]
32. verify ; 1. (진실인지·정확한지) 확인하다 ;; 2. 입증하다, (진실이라고·정확하다고) 확인해[말해] 주다 ; 유의어 confirm ;; [VERB] If you verify something, you check that it is true by careful examination or investigation. [본문으로]
33. come to an end ; 끝나다; 죽다 [본문으로]
34. scrutinize ; [타동사][VN] 세심히 살피다, 면밀히 조사[검토]하다 ;; [VERB] If you scrutinize something, you examine it very carefully, often to find out some information from it or about it. [본문으로]
35. double standard ; 이중 잣대[기준](상황이나 대상에 따라 다르게 적용되는 불공평한 법적·도덕적 기준) ;; [NOUN] If you accuse a person or institution of applying double standards in their treatment of different groups of people, you mean that they unfairly allow more freedom of behaviour to one group than to another. [본문으로]
36. legislation ; [U] 1. (의회에서 통과되는) 제정법 ;; 2. 법률의 제정, 입법 행위 ;; [NOUN] Legislation consists of a law or laws passed by a government. [본문으로]
37. ethics committee ; 윤리 위원회 [본문으로]
38. unethical practices ; 비윤리적 관행 [본문으로]
39. high-profile ; [형용사] (주로 명사 앞에 씀) 세간의 이목을 끄는 ; 참조 profile ;; [ADJ] A high-profile person or a high-profile event attracts a lot of attention or publicity. [본문으로]
40. fierce opposition (to) ; ~에 대한 강렬한, 격렬한 반대 [본문으로]
41. orthopaedic surgeon ; 정형외과 의사 [본문으로]
42. cadaver ; [명사] (전문 용어) 시체, 사체 ; 유의어 corpse ;; [NOUN] A cadaver is a dead body. ;; 미국∙영국 [kəˈdævə(r)] [본문으로]
43. graft ; 1. [타동사][VN] ~ sth (onto/to/into sth) | ~ sth (on) (from sth) (피부뼈 등을) 이식하다 ;; [VERB] [usu passive] If a piece of healthy skin or bone or a healthy organ is grafted onto a damaged part of your body, it is attached to that part of your body by a medical operation. ;; 미국식 [ɡræft] 영국식 [ɡrɑːft] [본문으로]
44. deceased ; (법률 또는 격식) 1. 사망한 ;; 2. (pl. the deceased) the deceased 고인 ;; [ADJ] A deceased person is one who has recently died. [본문으로]
45. indefensible ; 1. (도덕적으로 용납이 안 되므로) 변명[옹호]의 여지가 없는 ;; [ADJ] If you say that a statement, action, or idea is indefensible, you mean that it cannot be justified or supported because it is completely wrong or unacceptable. [본문으로]
46. clinical trial ; (의학) 임상 시험 ;; [NOUN] When a new type of drug or medical treatment undergoes clinical trials, it is tested directly on patients to see if it is effective. [본문으로]
47. efficacy ; [U] (격식) (특히 약이나 치료의) 효험 ; 유의어 effectiveness ;; [NOUN] If you talk about the efficacy of something, you are talking about its effectiveness and its ability to do what it is supposed to.;; 미국∙영국 [ˈefɪkəsi] [본문으로]
48. cervical screening ; 자궁 경부 검진 [본문으로]
49. control group ; 3. (약학) 대조군(對照群) ((동일 실험에서 실험 요건을 가하지 않은 그룹)) ;; [NOUN] any group used as a control in a statistical experiment, esp a group of patients who receive either a placebo or a standard drug during an investigation of the effects of another drug on other patients [본문으로]
50. be composed of ; ~로 구성되어 있다 [본문으로]
51. pap smear (smear, ˌcervical ˈsmear 모두 英; 美 ˈPap smear) ; 스미어테스트(자궁경부암 검사법) ;; [NOUN] A pap smear is a medical test in which cells are taken from a woman's cervix and analysed to see if any cancer cells are present. [본문으로]
52. in practice ; 실제는, 실제로 [본문으로]
53. life-threatening ; [형용사] 생명을 위협하는 [본문으로]
54. unacceptable ; 받아들이기 어려운, 용인할 수 없는; 환영하기 어려운; 마음에 들지 않는 ;; [ADJ] If you describe something as unacceptable, you strongly disapprove of it or object to it and feel that it should not be allowed to continue. [본문으로]
55. hunter-gatherer ; (인류) 수렵·채집[채집·수렵]인[생활자]. ;; [NOUN] Hunter-gatherers were people who lived by hunting and collecting food rather than by farming. There are still groups of hunter-gatherers living in some parts of the world. [본문으로]
56. -laden ; 3. -laden (형용사를 형성하여) …이 가득한 ;; [COMB in ADJ] -laden combines with nouns to form adjectives which indicate that something has a lot of a particular thing or quality. [본문으로]
57. sequence ; 1. [타동사] (전문 용어) 차례로 배열하다 ;; 2. [타동사] (생물) (유전자분자의) 배열 순서를 밝히다 [본문으로]
58. outcry ; [C, U] (pl. -ies) ~ (at/over/against sth) (대중들의) 격렬한 반응[항의] ;; [NOUN] An outcry is a reaction of strong disapproval and anger shown by the public or media about a recent event. [본문으로]
59. consent procedure ; 합의, 동의 절차 [본문으로]
60. as part of ; ~의 일환으로, ~의 하나로서, 일부로서 [본문으로]
61. indigenous group ; 토착집단 ;; 식민지화된 지역에서 나타나고 그곳에 남아 있는 인종집단을 말한다. 북미 인디언, 원주민, 마오리족은 식민주의적 팽창 이전에 그 땅에 거주하고 있던 인종집단의 사례이며, 북미, 오스트레일리아, 뉴질랜드 등에서 자신의 독특한 정체성을 지니고 있다. [본문으로]
62. transgression ; [U, C] 1. (범위·한도 따위로부터의) 일탈; 위반, 위배; 범죄, (종교상의) 죄. [본문으로]
63. raise awareness of ; ~에 대한 의식을 고취시키다 [본문으로]
64. cornerstone ; 2. 기초, 기본, 토대 ((of)) ;; 3. 긴요한 것, 필요 불가결한 것[사람] ;; [NOUN] The cornerstone of something is the basic part of it on which its existence, success, or truth depends. [본문으로]
65. funding agency ; 융자 대행 , 기금지원 기관 [본문으로]
66. genetic modification ; [명사] (유전) 유전자 조작[변형]. [본문으로]
67. twist ; 15. (사건 따위의) 예기치 않은 전환[급변]. [본문으로]
68. saga ; 3. 일련의 사건[모험] (또는 그에 대한 보도) [본문으로]
69. put sth on hold ; ~을 보류하다, ~을 연기하다 [본문으로]
70. come to a conclusion ; 종결되다, 결론에 도달하다 [본문으로]
71. press office ; [명사] (기관·정당·정부 부처의) 홍보[대언론] 담당 부서 [본문으로]
72. terminate ; (격식) 1. 끝나다, 종료되다; 끝내다, 종료하다 ;; [VERB] When you terminate something or when it terminates, it ends completely. [본문으로]
73. faculty member ; 교수진 [본문으로]
74. on condition of anonymity ; 익명의 조건으로 [본문으로]
75. grave error ; 중대한 오류, 큰 잘못 [본문으로]
76. international norm ; (정치학) <용어>국제적 규범(規範) [본문으로]
77. academic position ; [명사] 교수자리, 교수직 [본문으로]